Connecting the Dots with EDS in Managing Pain
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- čas přidán 27. 06. 2024
- The presentation discusses the causes of pain in EDS and how conditions such as POTS, MCAS, gastrointestinal and neurological systems play into it. We will also discuss the principles behind physiotherapy, as well as the pros and cons of different medications. The slides used are available in PDF form from bit.ly/2RqMkwY
I'm watching this video and crying. I've been looking for answers for ten years. I've seen all the "best" specialists. No one has been able to figure it out. They refer me to the somatic clinic and to psych. I don't have any mental health conditions. I'm just debilitated by my symptoms. He just perfectly described them all. I'm just sitting here sobbing.
A 20 years long odyssey, a very long time to finally have the correct diagnose, so i understand that You are crying, witch is of course not the case at all by me cause i´m a extremely strong Man (lol), must be some dust in my eyes or so... ;)
Now if only all of us could have access to these presenters. Wish they had a reference to the summary research paper and their contact info so you can give to the provider before your appt. Unfortunately drs will not have had time to read it. Contact info would be helpful so the dr if they are inclined can contact for a 'conferral call'...so your dr could call the eds/hsd specialist to find out what to do. Most drs in US probably dont have time to do this. Too bad there wasn't an EDS/HSD complex patient center in every state in every country. Depending on size of state, two might be helpful
Check out all vids with dr. Alan Polcinki (spelling)...typically through EDS society, or Chiari org, check his name in title...his talks to other medical professionals are very good. He really understands his patients. (I forget now but think his speciality is POTS but knows other areas. I imagine your reaction to what he talks about in relation to patients...sending them for psych consults, etc....because drs don't know.) Consume as many EDS vids as you can. If you haven't found dr yet, go to the EDS society in your country...see if they have list of drs for area. Typically none close to you...but you can also contact EDS physician professional orgs....they may have a different list. For the EDS drs geographically closest to you (even if that is by 1000 miles)...see what type of dr they are....like physical rehabilitation dr, ...lots of different types will have the expertise...not typically stated in website descriptions though. But you could go to your primary care dr, ask who within your area or insurance that is this tpe of dr or specializes in EDS/HSD. That is what I did. Also my insurance network didn't have the specialist...only the other plan that wouldn't cover my visit. The dr had to put in a prior authorization to go out of network. Had to wait a year to get in, another prior auth for the new year since the calendar year renewed. But everything was covered. For me specialist confirmed that I don't have EDS, but do have HSD. (Drs always say "just because you have hypermobile joints, doesn't mean you have have EDS or HSD." Getting confirmation that I had HSD put to bed all the nay-sayer drs who immediately would say you dont have it. (But they don't know what you have.)
I'm about to be referred to this man. I'm so excited to be seen as a person.
Wow you’re lucky!!
Hi,
Who is this man? Where is he? And how do I get in touch with him? Please, please respond. 🙏
It would be very helpful to know if your appointment with Doctor Chopra was a success. Not to seek personal details, but to know if he is worth the travel cost for an appointment. Thank you.
Thank you hugely for your expertise and insight! I have been on an EDS health journey and finally coming to realize and accept that I was not lazy, clumsy, not working hard enough or imagining my pain and body issues. Incredible.
Your experience is a mirror image of my life. I believe you.
Those three words, spoken by two complete strangers I talked to separately, who listened to my story of the list of physical and mental health challenges I face daily, have given me hope.
There are many people who have been living with the same story, repeated all over the world.
Maybe one day someone will put together all the pieces of the jigsaw of symptoms, identify a toolbox of tips, tricks, techniques and medications that we can combine to manage the symptoms and spread awareness.
Educate yourself then educate your doctor and any others who are willing.
Blessings from South Eastern Australia, Dot
Thankfully I finally found a good local doctor, who happened to become familiar with EDS because it turned out that her daughters have it. She put me on Mestinon, which treats multiple EDS issues - POTS/dysautonomia, gastroparesis, intestinal dysmotility, fatigue, and brain fog. I'm so glad I found this doctor and this medication!
My mind is continually blown by how I attended dental school here in Canada and have been practising for 26 years AND my eldest son just graduated from there too!! Yet I only learned about EDS, which I do have, through a lecture on connective tissue issues by a lactation consultant. Right there, at 37:25 when he starts talking about dental issues - in fact he’s already talking about TMJ !!
Sadly, and we have alot of dental issues.
Thank you so much for this. After 32 years of pain and sickness I’ve been diagnosed with hEDS, MCAS, and POTS. Appreciate this information
Why does GARD (The Genetic and Rare Diseases Agency) not know more? I contacted GARD and they don't know much other than to direct me to Ehlers-danlos Society. 🤦🏼♀️ Most doctors don't know enough to specifically diagnose EDS / HEDS let alone MCAS and POTS . We know we have these things but even if you get a diagnosis what does it even matter . If I can't get my pain relief medication anymore (because my pain doctor said he is scared now and he is sorry because he feels like I genuinely need it , but he is afraid🤦🏼♀️) so to even attempt getting around to do therapies or long trips to specialists, cant get to a store to even purchase simple items for home remedies (like OTC oxygen for fatigue ) and I cant figure out how to financial survive since I can no longer work for the past 6 years. I am losing hope and now understand why people turn to sucide and are seeking illegal access to necessary medical medication. Its not logical and we are far too weak to fight for our needs.
I have found amitripline helps a lot with pain. I went off it for a while & pain increased so much, so took it again & pain subsided. Hope it works for you. Now I can take 25,mg & doesn't make me sleepy during the day. God bless
It is unacceptable that you suffer pain because "your doctor is scared" but feels sorry for you. Is there a way you can get a referral to a pain service team? Unfortunately, most patients have to be their own advocates. If this doctor can't/won't help you, please get a second opinion and also see if there are also other support systems available to you for emotional support! With the current situation, telemedicine is being used widely and may be a way for you to access support without having to travel! Best to you.
Hang in there Michelle, I’m in the same boat.
That almost sounds like my path xD.. Spending half of my money on meds
One arm of the society helped me finding an expert to finally get a diagnosis after 9 yrs of pain.. Have to wait 4 more months for the first visit 😐
At least the pain will probably be over when we die
Medicine is teaching the doctors to treat patients like criminals now if they even, "think" they might want pain relief from severe, crying agony.
The Gov't has convinced them all that we are drug addicts, or worse, MAY become addicts if we are allowed to live our lives pain free.
The, "new meds," have horrific side effects, like Lyrica, effexor, gabapentin, bcz none of them target the actual pain receptors. They slow down the firing of ALL of your nerves in your brain and body, wh/is why you really do become stupider on Lyrica. It is a calcium channel blocker. Effexor is a, "Dirty Drug," bcz it affects nor-epinephrin, an endocrine gland hormone!! Only the plant based meds fit like keys into our brains to ease suffering. All the other ones, especially oxycodone/oxycontin are synthetic. That was created by the FDA& Perdue ( saw it on a Poster in my doctor's office!) to BE addictive. Cruel monsters.
They take away what worked for over 200yrs and blame patients for being in pain. "It's all in your head. You've got something called, Chronic pain Syndrome. It's a theory that, blah, blah, blah... " Basically criminalizes you and any doctor who wants to be a PHYSICIAN and, Heaven forbid, ease suffering in humans!! Modern Medicine simply does not care anymore. It has become World Class: Ethiopia!
Excellent coverage from A to Z. At last here is layed out so clearly the reasons for so many physical ailments that can plague and worry us, but most doctors cannot diagnose. A lifetime of worries have just dissolved. Thankyou.
It is a constant struggle to stand up straight. I wish more doctors could see that.
Nothing feels more homely than knowing that Dr. Chopra is from my place! And he has also done his preliminary medical degree (MBBS) from a Medical college of Calcutta (again where I live!!). It feels so homely to watch this video. 🦓
Why is it so difficult for us to get doctors to help us? Why are they so hesitant to help?
More importantly WHY ARE DOCTORS NOT BETTER EDUCATED ? How did our society adopt this whole PA system. If doctors don't have "time" to learn more about HEDS and EDS.. POTS, MCAS etc. Then how could PA's ever become educated?
Status,money(why work harder)lack of empathy(you look good to me) presumptuous (must have mental problems),puffed up with pride?
We need more doctors like you! This is me to a T.. it’s truly unbelievable how spot on this information is and how many Dr. have no clue.
So few doctors talk about that coordination of the ribs and diaphragm when breathing and the pain this can cause. I’ve only had PTs who know about this!
There’s a collar used at hospitals, it may be for children as I’m quite little. But it was great until the doctor took it off me and said I was fine and could go home. This is what I was told after a 98km truck accident (five tonner with a loaded caravan and white goods in the truck that were not secured down.
The brace put on my neck was not bulky at all but provided great stability. The moment it was clipped off I wanted it back.
This is a very helpful talk! I learned a lot. I thought I was well informed.
That was an incredible presentation. Thank you Dr. Chopra!
I’m so glad I watched and listened to this today. Took me awhile. Definitely worth my time. So much useful information for me. Thank you.
Can only take as long as the video
@@ElishaEhrhardtModifiedTease Well, it took short sessions with breaks over a few days, as I wanted to take notes, and hand cramps make that difficult. I also listened to portions more than once. So be kind, please.
@@ElishaEhrhardtModifiedTease no. Have you heard of the spoon theory before? Some people dont have enough energy each day to do basic things others have the luxury to do..eating bathing..dressing all come at a physical energy cost. So does using your brain..its exhausting. Just because you can do something, doesnt mean others can. Check your privalege, please.
and I’d ask you do the same. I am disabled and have to rely on others, thanks a bunch. You’re not worth my spoon, today. Blessings.
@@chrisr8735 you’re not Stella Helliconia,, thanks.
Thank you Doctor... you have explained this brilliantly. More PCP's therapists and specialists should be instructed with a quarter of the information for referring purposes rather than "blaming" patients who have multiple areas of pain from a diagnosable condition. Thank you for poroviding me a bit of peace of mind
So fantastic thank you Dr Chopra and the EDS Society. This presentation was at least 80% relevant to my issues if not more. Clear and concise discussion and explanation and options.
Thank you for this comment. And thank you for addressing the issue with doctors diagnosing people with Münchausen syndrome foolishly. It hasn’t happened to me but I’ve heard of it happening and it’s ridiculous.
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This is a fantastic webinar. It is informative for patient and practitioner alike. Thank-you
It really is. Incredibly helpful and wish i was near to him!
Thank you so much for this very helpful talk!
Fantastic. Thank you so very much for all the infirmation. Now to grt mh foctirs o listen to it and stop rollinb their eyes whten they hear EDS. I literally want to scream, its so dismissive extreemly unkind and so hurtful you ferl like all the time you waited and hoped for a good drs appt and all you got was dismussive "yeah sure you hurt in sll those places, and atyitute!" How do we not loose ALL hope?? SERIOUSLY?
This is exceedingly helpful for me as I am seeking diagnosis for my mix of symptoms. Thank you for sharing such a fantastic talk.
WOW THANK YOU THANK YOU THANK YOU! I have been struggling for years and years with hyper-mobility, SIBO (10+ years) MCAS, dislocations for over 25 years! Bruising and poor wound healing, pProm and so much of all the info you mentioned. Just recently suspected by MDs I have hEDS I am so so so thrilled you did this video b/c it helped provide solutions. UCSF and Stanford are like 5 months waiting for a genetic diagnosis so I am frustrated to wait that long for help. So I really really appreciate your info, kindness and time for those EDS patient waiting in limbo. Do you see patients by chance? Thank you again! DO you have a website or recommendations for MDs?
Thank you. So much for this. I felt like god sent me this video to be honest. I have been sitting here in tears/school just going , yup that’s me.
I’ll be watching it with family sometime later. Fun movie night!!! 🥲
Amen!
Thank you Dr. Chopra and EDS society! So interesting and informative. I wish I had found this video months ago, it would have reduced so much of the time I spent researching trying to figure out much of this info simply to arrive at exploring EDS and I'm now seeing everything come together. So many misdiagnosed conditions and dismissed symptoms that I've been telling doctors and adults about since I was a child.
I put it all together somewhat accidentally and very recently. The covid vaccine completely disabled me a year and 4 months ago. I have been seeing doctors and looking for answers myself because none of them will listen or even consider the vaccine or why I reacted so badly to it, even provided with a mountain of evidence and research.
Along the way I almost died from severe serotonin syndrome that my doctor thought was MS after testing for lupus, lyme, etc., and suggested doubling my 30mg cymbalta (thankfully I asked for it to be reduced instead or I probably wouldn't be here), sudden allergic reactions/mcas/even slower healing with no allergies (Dr won't confirm mcas, only believes in his limited tests although he has no other explanation, and every immunologist within 100+ miles is with the same group... the one I did find in a bordering state wouldn't respond), severe dysautonomia, neurological, and cognitive issues, symptoms of both pots and csf, etc. It has been horrific.
I discovered I had a lifelong undiagnosed histamine issue after one day on a low histamine diet had such a dramatic and immediate effect. After a week of low histamine, antihistamines, and mast cell stabilizers, I was a little better and my lifelong keratosis pilaris was 50% gone. Mystery swelling and other issues attributed to other things improved as well. That's when I discovered and confirmed I was heterozygous c677t mthfr and I was sure I had mcas (I literally have every clinical presentation as well... pages and pages of them) and scheduled with the immunologist with all of that in hand. He barely glanced at it and ran his tests then gave me singulair, followed by naltrexone for chronic pruitis, and referred me to a rheumatologist and neurologist. I have several referrals from multiple doctors to rheumatology and neurology yet the only one my pcp has been able to get me into was migraines-only neurologist and told me to talk to my pcp about the possible EDS.
I started reacting early on to everything that helped the mcas even at microdoses and had to stop or greatly reduce them. Then the pots and csf symptoms got worse and really put me down.
Singulair and naltrexone help but make my anxiety panic attack level. Antihistamines, ketotifin, flerxeril, hydroxyzine, and anything that increases serotonin at all makes my neurological stuff and cognitive issues worse (jerking, involuntary movements, twitching, confusion, memory, etc) and make me groggy, out of it, and sleepy all of the time.
I'm curious what your thoughts are on those strange and super sensitive reactions despite how much they help. I have always been sensitive to meds, otcs, and even vitamins, but nothing like this. When I realized I fit the criteria for EDS it made more sense because I think the mthfr, histamine issues, and mcas have been going on for many years. The vaccine just sent it all over the cliff and triggered even more problems it seems lol.
Thank you again... such thorough, precise, helpful, and easy to follow work!
Thank you for sharing your information with us. I was diagnosed with benign hypermobility syndrome. Which to me just to the way the diagnosis sounds means nothing. But I was later diagnosed with Ehlers Danlos syndrome. This was when I was into my 40s. I can look back at my growing up Young years, my teenage years, my adult years and see problems all throughout life. One of the most difficult problems is my sensitivity to smells as well as nausea in the morning and difficulty brushing my teeth. I am thinking back and wondering how many dentist thought that I must’ve been, some sort of anorexic, although my body type didn’t look like it so then may be bulimic. Because I had a erosion on my teeth. I would throw up an enormous amount of phlegm every morning. I did not know why, but now I suspect possibly mast cell issues. I cannot be around certain smells especially artificial ones. And when I tell people, especially my son that uses cologne, I think they think I’m making it up and then I have to explain. No really it’s a medical problem. I am not sure I fully explained everything you discussed, but that is good because we all learn more as we grow, read and gather more knowledge. For a while after my diagnosis, I noticed a lot of tremors with both upper extremities. This was difficult for me as I was still working full-time as an occupational therapist in an acute care hospital. I am currently medically retired from my OT job and I am on SSDI. I am so fortunate that I have gotten my SSDI after two tries. I don’t have time to finish watching this video tonight which is October 18, 2023. I do plan on finishing right from the start. I can tell he has interesting information for us.
Excellent video!!! Very informative.
Great info! I have everything you spoke of. My doctor will think I took a course!
I am very thankful for all this information, it is very helpful.
Thank you. Sincerely. THANK YOUUU!
This is the only answer that explains that perfect 🥰
Love this doctor.
A CSF leak would explain this headache and my need for a lot of caffeine, like a fiend. Very informative, thank you so much. This info has been needed for many years.
I had a CSF leak, it ran out of my right nostril for about a month. Soon as I would lay down the fluid would stop running out of my nose. If I was upright and I leaned over it literally dripped out like a faucet. Terrible headache that stopped when I would lay down, but as usual, doctors don’t believe you and by the time they got me in to do an MRI it had stopped, of course.🤷🏻♀️
Thank you 🙏
This is an amazing seminar! A therapist asked me if I have it. And my response was, " WHAT'S THAT?!". And so, now I want to learn and find out if I COULD be on this spectrum. Thanks, and stay amazing! 🎤 👍😁👍
This was amazing!
SO helpful ! Thnakyou
the moment the cream was recommended I immediately went on Amazon to get it. idk if I have mcas, but I do have a lot of allergies and sensitivities and one of them is to all forms of adhesive. if I get injured, I basically will decide to only wear a band-aid for a few hours or for as long as I can before I start to get too itchy. I've been too afraid to try kt taping. I never ONCE considered a cream or anything to.... prevent a reaction. plus, the reviews say it's good for under breast and thigh rashes from sweat/friction. yesss
What is this. Cream? Missed the name! I NEED it and daughter , granddaughter! 😀
@@painiacs83
Cavilon Cream aka Soothamide. I was making some notes and that's what he recommended before applying the tape. Or Milk of Magnesia would you believe!
Thank you! I honestly gasped and said “oh” multiple times. It all makes so much sense how these dots are connected & I absolutely need to get neck imaging soon. Years ago my physical therapist had said my neck felt like an “infants”and we tried strengthening it and it helped but, I’m again back to falling apart at the seams from the feet to the neck.
Thank You so much !
Love this video!
I feel like I'm falling apart and I can't have a normal day without pain. It's either a migration, neck pain, shoulder pain, strained upper back, or all of the above and it's been this way for years. I'm nearly ready to just give up. HELP
Same been feeling pain for months and having multiple test and check up and yet they cannot find any yet. Only minimal and they also give light meds even force that we are ok, we seem to be fit and that pain killers will help 😭
@@francescavillapando8919 I've been given Triptans and anti-nausea meds and I don't like any of them. I had a migraine Nearly everyday, for 10 years. X-Rays of my skull, brain MRIs, and X-Rays of my spine don't seem to find anything. The only thing that helps is Ibuprofen, several times a day, but I refuse to be on pain meds for the rest of my life.
@@misssrubie this is *exactly* what I'm dealing with
Some things that have helped me that might be worth looking into if you're still struggling (hopefully you're not still in pain!!): Kratom, live resin cannabis/cbd, coffee enemas (IMMEDIATE AND awesome relief instantly) epsom salt/magnesium baths/foot baths, quercetin, b vitamins, infared heat pads, PEMF, massage gun, topical pain creams, low histamine diet. Don't give up!!! There is hope!
As long as you're not chronically hyperventilating, nor having a feeling of going to faint 24/7 with severe head STINGS paired with extreme dizziness, you are good, trust me.
Thank you for the information.it is so sad that many doctors does not understand the complexity of pain, co morbidities and eds
I wish I could print all these slides off and take them all to my neurologist because he absolutely believes a csf leak isnt tied to EDS as well as my MCAS. I have a severe upright headache and he absolutely will not agree to anything csf related
Screen shots of the video can be taken then to be put into a Word document or a Power Point presentation. Then it can be printed or sent as an attachment to a neurologist via e mail. The video link added in the end of the document can be used as a source of the information.
A video on CZcams channel is the best instrument to explain and for people to understand. However it is not a valid source for argumentation in Science or Medicine. Therefor it would be helpful if this information was published in a written form like a scientific journal or a book.
See Dr gray at Duke University
In the vid description, there is a link to the slides in a pdf! The computer generated transcript is there too. It is not perfect, depends how clear the computer caught the words spoken. (Depends how much practice the AI has had in listening to varying english accents)
Covid long haulers have mast cell activation, also some people who have used aspartame have developed horrible mast cell symptoms.
How do you manage to manage to get a new PCP to understand.
I just had a prone MRI.
The machine was very old.
I'm 64.
I explained sitting and flection MRI.
I was ignore ed
I got told off so much for the way I held my pen to write, I just always thought it was a weird quirk I had, finally there's an actual proven reason to explain it.
I have Long Covid with no pre-existing comorbidities except hypermobility syndrome which never really affected me bar a costochondritis flare if I over-exercised (which I got overtraining with a personal trainer years ago), but I am now suffering with dysautonomia/ mcas/ pots (or at least something close to it) and just got diagnosed with CCI.
If these things were known about earlier on for me I could have done even more to keep myself strong and yet not over-push my body.
Best webinar I've heard on these subjects yet, thank you!
Just curious, did you receive the c shot? Did you notice your condition got worse following the shot ??
Hope you’re feeling better soon!!
@@ciarasullivan1379 I'm assuming this happened to you or someone close to you? I'm sorry to hear it. Unfortunately the virus and the V can cause the exact same reaction in people, Long Covid and post V injured people actually have the exact same immunology profile, acute Covid is an entirely different immunology profile/ immune response.
Most of the Long haulers I saw getting the V got worse after it, but some were getting better/ having their symptoms improve, so I started to pay more attention to who that was happening for, 90% of the time it was older women and men, almost all the fertile aged females got worse, so there is a definite hormone component which makes it even harder for us to get better, every month with our cycles our symptoms flare again etc. It's the reaction to the spike, so whether from the virus or the V that's what we are reacting badly to. It's a message I've been trying to share for a while now, so people can make informed decisions, but unfortunately they haven't been honest about most of this mess from the start.
If you're interested in learning more you can check out Dr. Bruce Patterson's work on the subject, he's been trying to treat long haulers for some time now and the good news is if you didn't have problems until the V and use his treatments many people have had improvements because really the only difference between the post V and the post virus long haulers is that the post V didn't seem to have the respiratory side of things anywhere near as much and because they're getting treated much earlier the damage was far less than what it did to those of us first wavers who got told it was in our heads for a year and got nothing to stop the vascular damage cause nerve/ nervous system damage etc.
I hope this helps and you/ whomever you know going through it gets better!
I also have hypermobility and after covid I have chronic pain and worse pots symptoms. I never knew I had pots! And then I found out that my mother and grandmother have been diagnosed with Eds in the past
thank you good talk. Have you run across any EDS patients with rectocele that have air in their liver bile duct tree?
Pain Terminator isn't sold through Amazon. I just looked. (I live in the US)
Try Low Dose Naltrexone (LDN) for EDS pain. I’m on 3.5 mg after 1 year for my hEDS and Cranialcervical Instability pain and it has significantly improved my pain management. It’s a non-opioid medicine. It’s also has helped with my anxiety to an extent.
I was diagnosed with slac wrist in both wrists as well as bad thumb joints I had a carpectomy and a fusion and cmc arthroplasty it’s the largest surgery that exists for wrists, but I knew 40 yrs ago something bad was wrong with my wrists but no doctor would listen
I got a new primary doctor who claims to know about Eds but when I implied it’s effected my spine she said joints only but you do have a lot of arthritis in your spine. When will doctors be good again cause most suck
Refer her to this video.
Has anyone researched Thoracic Outlet Syndrome (blood vessel being compressed in thoracic region, by various causes). YT channel, TOS MRI has many educational videos about TOS which has been a controversial diagnosis for last 10 yrs. It has lots of symptoms similar to orthostatic intolerance, headaches, painful use of arms and legs. I just discovered the syndrome which does have treatment. They say after treatment, far less pain and many ppl regain function of their limbs again. Please see if it fits anything with you or anyone you know. There is no research literature linking EDS and TOS...I assume because everyone has a hellish time getting diagnosis of either disease.
Atrantil is great for methane SIBO also. H2S SIBO Dr. Pimentel lab trio breath test,
26:00 empty Sella syndrome
This is amazingly comprehensive
Can Prolotherapy help with CSF leaks?
I have eds and pots I am only 12 how do I can I manage at school
Hi Amelie, this video should give you some helpful tips! czcams.com/video/51gn_DFiW2U/video.html
what should you do if the EDS doctors in your country (Canada) are not able to treat EDS?
CSF doesnt cause dizziness? A lot of other resources seem to say otherwise.
Thanks for sharing ♥️ from Gafsa Bux 🇿🇦 ♿ 🦓 🌈
Hi is the slide link broken?
Sometimes my pain is just off the charts too painful… yesterday I was in so much pain that I was panting…. Going to be hospital ER wouldn’t help as I have plenty of pain medication,so I don’t think they would help me. I also have those fibrosis tumors that are very painful and they were causing me the worst pain ever… felt like hundreds of sharp needles were poking into the tumors… I’m not into being an attention seeking whiner but yesterday was a virtual nightmare and I was afraid of the pain not going away… but thankfully it was better after a few hours and a dose of pain meds helped lower the pain
00:24:12 Surely he's incorrectly drawing the foramen magnum here, isn't he? He's drawing it to the dens (C2) instead of the basion. This underestimates the amount of cerebellar herniation.
No change in blood pressure with POTS?! I have Hyperadrenergic POTS and my blood pressure can go sky high (like 200+/160+). I feel like I just had a large dose of adrenaline.
How many work with eds? I'm starting to struggle with my job I'm a dog walker and my body's falling me fast. I'm on 38. Already lost my plumber job and business because my condition and worried I'm losing this one as well.
I became disabled in late 20s and was a RN. Started with back injury and spiraled from there! Didn't know we had EDS until last year in 62! My daughter in her early 30s and having health issues. She found out has EDS! My son had it the worse! Contributed to him falling to his death ... so apparent now , too late so much damage done...
Good luck. If needed get good attny for disability but being self imployed not sure eligible
We found that a low salicylate diet helped calm Mast Cell Actuvation
Everything but nobody says what can treat the pain for EDS
Try amitriplene, it helps me. ,,25mg @ night
@@janprince4087 , I’m lacking the genetic enzyme to break most alternative meds down. I’m no longer allowed to be prescribed what did work for over 20 years. I’m bedridden . I have no life. I wish alternatives worked for me. Your offered a long list of medications that you have trialed before several times pre genetic pharmaceutical studies. Now, I understand why so many medications made me so ill. I just saw a specialist in pain management who did not know how to read a pharmaceutical report on me...and certainly did not know much of anything about hEDS since he would only focus on my nerve root impingement of my neck. Refused to look at my earlier MRI reports of tarlov cyst disease or herniated discs, let alone a prior history of breast cancer. I give up.
Ha
Clonidine can address some of the pain. It can also treat dysautonomia/POTS, migraines, and anxiety; which often also accompany EDS.
I take CBD every night. I have had to increase the amount because either I’m getting worse or I’m tolerating it more and it’s not working as well. However, I couldn’t walk up a curb 6 years ago and I can now! I’m 54 years old. I take 40 mg at night right now and probably going to start taking 50 because the pain has increased. I was self diagnosed until 2 weeks ago. Waiting for labs so the Dr can say which “type”.
Low dose Naltrexone and drastically reducing sugar in my diet made a world of a difference for me after 15 years of daily methadone and oxycodone. No more opiates, except rarely when needed.
My child got taken away and my rights were terminated. I was called psychosomatic and my daughter was just copying me when she complained of joint pain. She had a bruise and claimed I beat her with my cane.
So sorry to hear what you're going through Tiffany - our helpline team are available to offer support: www.ehlers-danlos.com/eds-helpline/
I'm so sorry you're going through this. It sounds like you might be a targeted individual. Seems those of us with certain genetics are frequently targeted. Its a depressing rabbit hole to go down, but for me it helped me connect dots, so it might be something to look into. I can send you resources if you'd like. Stay strong!!