"I've been dealing with chronic pain for so many years, I honestly don't even remember what it's like not to be in pain" ...Same girl...13 years now. .God bless you
the most annoying thing i experience (besides the pain) with hEDS as a 15 year old is : *you dont look sick"* *"its just growing pains/hormones"* *"your too young to have joint problems!"* *" quit attention seeking"* and the one that takes the cake: *" have you tried yoga?"* im still in the process of diagnoses, still, *three years, in pain.* your videos have helped me a ton! please keep it up, this is my only form of support at the moment ;v;
I feel your pain, figuratively! I'm 53, & I can't say it'll get better soon, but once others start experiencing their own health problems, they'll start to get it. A lot of your peers won't catch up to you for many years. Talk to elderly people--they were always thrilled to find a young person (when I was in my 20's) who would listen to them. You'll feel understood, & they'll feel heard.
Hey..I diagnosed with EDS just few months ago..I myself doctor, took 8 months to made the diagnosis. It was too out of my hands. I was suffering with multiple bone pains, fracture, bruising,dental pain.people told me .u r just fatty..u need to lose weight..u look absolutely fine. Finally, after spending too much money and time, I came to know I have EDS.
@@STABloid I dont have this illness, and i cant even begin to imagine what it must be like but all i want to say it that Jesus knows your pain, and he understands it. We live in cursed, sin filled, fallen world, that is why some hurt more than others, but Jesus is always there to rescue us from the pain we face each and every day. Have you ever heard a song called "one day at a time?" it has helped me deal with the pain and hardships the devil throws at me. I realize that Jesus Christ is my only hope and that if i continue to trust in him, that he will deliver me from my pain day. Christ has suffered on the cross so that we may have health, and more importantly, happiness. "....And by His stripes we are healed" -Isaiah 53:5 All we need to do is ask in Jesus Christ name believing that He hears us. I bless you in Jesus Christ name, I will be praying for you
@@irisydavidmendezguerra7731 Well there's nothing like some god-botherer to barge in on a conversation about some important issue, like chronic pain, & spew the same old superstitious bilge with no regard for the people that his message was supposedly meant for. The Bible is an old book full of myths, tribal warfare & religious fanaticism, a toxic relic from a time before humans began to investigate reality in a systematic fashion (it's called "science". Read up sometime, it's fascinating stuff). As a history buff who suffers from chronic illness every day, I can tell you that one thing that _doesn't help at all_ is when some True Believer starts preaching his doctrine. It is not helpful; in fact it's obnoxious, annoying & useless for improving the morale of any thinking person. Buzz off.
I recently had an upper back injury that hurt 24/7 for 2 or 3 months. Not as physically painful as mentally painful - a discomfort constantly stealing your attention away from the minute you wake up. It humbled me. People with years long chronic pain are warriors.
I use ice and heat, massage, essential oils, stretching and exercise, tens machine, cupping, braces and splints, and I take paracetamol, ibuprofen, gabapentin, amitriptyline, tramadol and oramorph.
Wow so is my daughter she is 8 years old shes on amitriptyline paracetamol nurofen got tense machine massager cold pack hot patch but nothing is helping and shes in constant pain all the best
I want to add in baths with epsom salt! There is a sport healing salt mixture that I love as well as some other magnesium salts or soothing bubble bath mixtures that have been a lifesaver for me on tough days.
i loveee dr. teal’s melatonin bubble bath, it has epsom salts and essential oils so it relaxes your muscles and your mind and it’s so pleasant before bed, because it leaves your skin soft and your muscles relaxed and it has a really nice scent, and i have extremely sensitive skin and it doesn’t irritate me at all!
thans for this❤️😍 i’m 13 and i have much pain but my parent don’t believe me. i asked if i could go to the doctor but they just said no. the day i’m faking it and if i have eds or hds my joint would pop out/sub lox more but my joints do but i never tell them and this video really helped me❤️🔥😍
I’m sorry for your experience with your parents. I had leg pain when I was young and I was also ignored. I found hot baths worked for me. As for your situation, keep asking to go to the doctor. Tell your doctor about your chronic pain and other symptoms. He or she will help you. Until then, stop eating animal products and focus on a whole foods plant based diet if you are able.
I have hypermobility (not as severe as yours) and the leg rolling thing has always been with me! I can't really stand with my weight distributed properly on my foot for the same orthopedic reasons. People always acted like I was doing it on purpose as a kid and I realized seeing you talk about it that I've always seen it as a personal deficiency... Same with my difficulties with exercise all my life, which I now think are due to hypermobility orthopedic issues and possibility POTS. The adults around me really treated me like shit for not having the "good attitude" that would have magically transformed me into an athlete. It makes me so mad to realize how gaslit I was, and sad to the extent that I didn't believe myself and my own pain. But also I'm happy to have the occasion to see all those experiences through a properly nonjudgmental lens.
I feel this HARD. Am watching this in bed, kept awake from the pain of my subluxed ribs and hip. I'm seeing my GP tomorrow, but right now I'm exhausted and aching... You shouldn't pop whenever you breath.
I got my pregnancy pillow a couple of years ago and I can't sleep without it! If I move around too much and push it out of place, I definitely notice a difference in my pain levels the next day.
I'm leaving the bath full of water! Don't care how cool it gets, it's a relief at the moment. Now have to contend with over sensitive eyes. Sitting in dark places is my only relief.
Charla Perkins I actually have been using my heat pads, but we have AC so as long as I’m in the house I’m ok. And supposedly niw with this rain- assuming you’re on east coast too? The heat has broken and today is in 70s. Yay!
my hip pain is the absolute worst when i’m about to fall asleep or when i have to sit upright for prolonged periods of time. try putting a pillow between your legs like she suggested, and if it bothers you while sitting i always put my legs up a little bit, and bend them at the knee, or i also tend to slouch and straighten them out a little more, as the 90° angle is extremely uncomfortable to me (slouching is probably not good to do because it isn’t the best for your back but it alleviates my pain a little bit so i do it anyway)
Really useful video, thank you. I too am in chronic pain and have no recollection of what life was like before! Thanks for all the ideas, I will be saving this one!❤
There was a lot of good information in this video. I was skeptical about the benefits of essential oils as well, but I get a lot of severe tension headaches and I have found that an essential oil blend made by Twig and Petal (which I order on line) has almost eliminated my headaches completely. I have it diffusing in my office all day long (I work long hours as a medical transcriptionist) and it has been incredible. I don't know if headaches are a problem for you, but if they are, I would highly recommend this. You can also rub it on your neck and temples. It also smells amazing.
@@jobell7356 It's peppermint, cajaput, lavender, rosemary, eucalyptus and vetiver. I order it on line as you could in the UK. It's made by Twig & Petal and called Headache Relief.
Can you give specific information on the blend? I’m a chronic migraine sufferer and I also have EDS and fibromyalgia. I’d love to try it out. So glad you have had success with something!
I use pillows for support, too! I really like the little pillowy stuffed animals Five Below carries called Squishmallows. The stuffing is soft, and they're small enough to prop up where I need them. Plus it's nice just to have something cheerful if you're in pain. :) Hope you're getting better every day!
That's so neat! :) Looking around online I've seen others mentioning using them this way, too! It's so nice to have something that helps and also makes you smile.
I use narcotic pain meds. I take one in a high dose that lasts 24 hours, as well as some for breakthru pain. I used to hate it so so much and then my doctors said why should u be so miserable if u don't have to. I also have a medical service dog, along with a heart monitor under my skin. I'm getting a pace maker and feeding tube on Monday. Depression is my worst enemy.
Jose David Mendez while ur comment is true,! Many require medication for depression. God created doctors for a reason. Most of the time we need them to heal.
Thanks for these videos. It keeps me company in a way, and makes me remember I'm not really alone when I'm lying in bed in pain. I just can't get up today, I'm on my pillow pile with my heating pad just going through my YT watch list. Kinda sad really, its snowing and I want to go out and see it, but it's probably the cold snap that has done this to me.
You have fibro & you work out?? If you're serious then you have more willpower than most of us...my worst condition is Meniére's & I haven't done a workout in _years...._
such a helpful video! I started dealing with serious chronic pain this year, but looking back I can see symptoms of chronic joint pain and issues throughout my life.
Your advice on dealing with pain is helpful, I’ve been dealing with chronic back pain for a long time now You’re a beautiful strong person very admirable your strength is legitimate
Izzy when you mentioned Advil not being good for.you but you take it when it's really bad, please I can not stress this any more than I am, please be careful with that medication. Any pill with Naproxen, Ibuprofen or Aspirin products in them can lead to SEVERE damage to your stomach and esophagus, I should know because I did take that medication for a long time for my chronic pain because doctors didnt want to prescribe anything else, and now I'm paying the price for it, I have damaged my esophagus and stomach, and the damage is irreversible.
I watch this video whenever I have a chronic pain flair up. I was diagnosed with hEDS this year... It took over 30 years for me to get a diagnosis and one year after finding out my identical twin sister was diagnosed with the condition. They didn't believe that my twin sister had been diagnosed so I had to print out her letters (she was diagnosed by two specialists including professor Rodney Grahame). I went privately in the end (I live in the UK). Thank you for all the awareness you spread as it helped me in my journey to diagnosis. Xxx
These are good tips. I like that you started with the medication-free tools first. You have such good ways to manage your pain. Thank you for educating people on what helps you!
So glad you made this video, I'm always looking for ideas on how to handle pain! I wholeheartedly recommend Stopain (they have it at CVS, I swear by that stuff, no other topical has helped me as much as that one). For me when pain is really unbearable it's often a sudden onset so I have trouble thinking straight, so what has helped me a lot is having a list of pain fighting measures from least harmful (heat or cold, stopain, etc.) to most harmful (pain meds, at least harmful to me as my kidneys have suffered over the years). So that way I don't have to think too much, and I can work my way through my list and see at what level I get relief. Idk if that makes sense, but maybe it helps someone. Love your videos, Izzy! Also, more kitties, please :)
my lovely mom gives me a massage quite often for my pain ❤️ i am 13 years old and doctors suspect i have EDS. I search “how to help EDS pain” when i’m in overwhelming pain, such as right now and i love your videos!
Great stuff! Thanks for sharing! I’d like to add what’s helping my pain for hEDS and that is- Low Dose Naltrexone (LDN). I’m at 2 mg but you can go up to 4.5 mg. It’s safe to use, it’s anti-inflammatory and it does give you energy! You can also take it while pregnant and it helps to prevent miscarriages in studies! It has made all the difference in my life and has been essential, especially during flare ups and while TTC! Hope this helps someone!!
A lot of those things help me with my pain too. I tend to have more pain in the winter time, that’s why I try to stay in. I go outside and it’s too cold my body starts to hurt and we had a fire in February I’m glad Michael wasn’t home, anyway I didn’t have a jacket on, or socks temperature is 20° I was so cold and so sight that I thew up... ew what helps me is a nice warm shower, breathing exercises, I do sometimes take acetaminophen, and I’m constantly moving around in my wheelchair. Speaking of WHEELCHAIRS you look absolutely adorable in you manual wheelchair. Nice seeing you again. See you soon you’re friend James The McMillens
I JUST started using a foam roller a few days ago. It is surprisingly helpful! I've had chronic, constant pain since 2014. I had a spinal that seemed to go perfectly fine, until the numbing effect wore off. The pain stayed.
Jesus Christ can take away your pain, for ever. With Jesus Christ ALL things are possible, whatever might seem impossible or even unimaginable for doctors and science is possible for an Almighty God. He formed you in your mothers womb, he can have complete control over you sickness if you want, all you have to do is tell him that you desire his purpose for your life. You are beloved, Jesus is calling you to his arms, run to him for he is LOVE. "Let the morning bring me word of your unfailing love, for I have put my trust in you. Show me the way I should go, for to you I entrust my life." - Psalm 143:8 Christ's love NEVER fails, he died for you so that you can have happiness and everlasting life! czcams.com/video/o7Sru47J8Z8/video.html I encourage you to watch this video about Gods plan for you!
I have chronic pain and I also have EDS, too. I can only take ibuprofen or Tylenol because of my medication that I take to control my Epilepsy. And I can’t use a TENS unit. I have used a heating pad before. I also use icy / hot or bengay it’s a cream to help with pain management
This video made me miss my my brace collection. When I moved I miss placed all or them I changed jobs so I don't have to take the with me every day. Although I had bad ankle swelling/slipping fun and I just my feet shrunk again so I have tight leather boots I got from a Army surplus store, great ankle support not much padding. I find it interesting how common heds is but until recently I spent more time explaining what it is to doctors. With this move most I have seen at least know what it is if not how to treat it.
I have POTS and heat intolerance, so I have to just use ice packs. I get a massage once a month,I do yoga and foam roll too. I love that doterra cream too,it's like natural icy hot. I also absolutely love my adjustable bed too,cause before I was having to sleep on 3 pillows which is not good for my neck. Im going to have to invest in thay massager for sure. I have to use compression socks and braces too. Thank you for this video, it's so refreshing to hear from someone who goes through the same stuff as I do,cause I'm sure you know dealing with Chronic illness can be so lonely. I hate being stared at when I have to use my walker or wheelchair
Thanks for your videos, I find them really validating because I think I have a habit of denying what I'm going through. But I see so many similarities.
So incredibly helpful to hear from someone who actually deals with the pain themselves. Thank you for sharing! I took notes and look forward to giving your tips a shot :)
Oh dear I also have the problem of constantly moving and trying to find a good position! I have about 5 pillows in my bed and all of them get used😂 As for medication I take LDN (low dosed Naltrexone) which my doctor recommended to me and it works wonders! 😍 oc I dont have no pain but its gotten so much better with LDN! Highly recommend this😊
my doc has suggested LDN to me. I've thought abut trying it but right now my pain is managed decently well with duloxetine, at least enough where i can manage, and if i want to start managing it better at any point i think that might be my next choice!
Thank you so much for this! I have pretty unmanaged muscle and joint pain. I use a lot of icy hot and muscle rub lotions. My whole family can smell it throughout the entire house 😂
Distraction is my favourite pain relief, not found meds that help much yet, but a good video game can make it way less stressful (if I've got energy and mobility to play)!
I have really bad nerve pain in my neck and shoulders, and the under arm support is instantly giving relief. I'm using a small blanket and I'm wrapping it around, have it tucked under my right shoulder blade that is always dislocated, and I have some elbow support too. What a jigsaw puzzle! Thanks for figuring that trick out!! It might not take five hours of adjusting to get to sleep tonight. Maybe just four now. :p
You are so young to be dealing with this. My painand partial hip dislocations didnt start until my 30s. Now I am 46 and its hitting me hard in my left hip, knee and ankle. I often wonder why I didn't have issues when I was younger.
Massage is amazing ♡ I foam roll too. I recommend shiatsu. Essential oils are amazing, I recommend ylang ylang, lavender, wintergreen, menthol, camphor.
Hey I was just put on duloxetene a couple weeks ago! At first when one of my drs suggested it to me I internally rolled my eyes because I am so sick of drs throwing antidepressants at chronic pain patients as if it's a proven solution (heads up: with the exception of a couple, antidepressants have not shown to be any better than a placebo when it comes to treating pain), but I'm actually kind of feeling hopeful about this one because I'm only like two weeks in and it's already helping me sleep!
My doctor starting me on it recently too. I would’ve felt the same way as you but he explained to me why he thought it could possibly help (which it does to a point just not much) which was because some of my pain is nerve pain which might be why your doctor recommended it. I don’t know how recent your comment was but I hope it’s helping and I hope you’re doing well :)
I love the ending of this & how you express yourself!! Very similar to me, both in your action and reaction (to yourself)… 100% the way I act 🤣🤣 I adore your personality! 💕😘
Hi, I have PoTS, fibromyalgia and RA. I am currently really struggling with a pain flare. I wanted to say THANK YOU for this video, especially for the pillows under the arms suggestion. My fibro targets my left shoulder, jaw and ribs. My RA is basically making all my joints hurt. Stuffing pillows under my arms has been a huge relief and I had never thought of it before! I usually use heat for relief but I think my PoTS is out of control and causing me to feel super hot like I have a fever so using my heat pad is miserable. Currently have an ice pack at my lower back and it is helping a bit. I need a bigger ice pack! So, thank you so so much for sharing your experiences. I really appreciate it x
Hey Ive got ehlers danlos type 3 as well, and I never thought of using pillows to stabilize my legs so thanks for that. I have also just recently started using cbd oils, and creams and they really seem to help a lot and have also found its not so much the company as much as it comes down to which strain was used to make it. Just a heads up though the best thing you can do for pain management is to work out, the stronger you can get your muscles, the more they will help to keep your joints in place, I havnt had a single dislocation in 3 years, which is quite amazing considering I used to dislocate my shoulders while sleeping a few times a week. I also try my best to keep active, I', 28 and have stayed away from wheelchairs and other assisted devices by keeping my body as healthy as it can be.
Thank you for sharing your story, it was very helpful. I dont have EDS, I was misdiagnosed by the same doctor (yes I changed doctors, lol) TWICE and now I have chronic joint inflammation and pain. Im going to give some of your ideas a try. Thanks again, be blessed always
I use Deep Blue too! I found the way it works best for my body is to buy the essential oil blend and mix it in my favorite lotion. I find it is also a better value that way too. Great video! 😊💕
Your video was awesome! In the beginning when you say you have been in pain for so long you don’t know what it’s like without it , know this is someone who knows what it’s like to be in serious pain. The Doterra cream has the same ingredients as mentholatum (think Vics Vapor rub) but vics is a lot cheaper. My pain is not from muscle or bones but from my pancreas. It is an internal pain that is crippling and is 24 hours a day 7 days a week. I use a combination of liquid hydrocodone and gabapentin which allows me to be able to live my life enough to do my own laundry and prepping my meals which are liquid. I also use meditation and conscious dreaming to help with being able to function. The pain meds cause me to be very sleepy and I sleep 6-8 hours a day. Even though you and I have a different kind of pain, I really enjoyed your video because it made me feel like I wasn’t alone in my pain. Thank you for doing these videos.
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bad THC experiences are often from sativa strains, if you feel like you want to start using it again i definitely suggest indica, as it doesn’t give you that specific type of “high” feeling that causes you to dissociate (or at least causes me to). sativa is often used for chronic pain bc it tends to be higher in THC but just in case you wanna try it out again that’s just my recommendation !
Massage and *HOT BATHS* are heaven for chronic pain. I don’t have a tub at my current apartment, so no soaks for me. But I cannot wait until the day I can take warm baths again. They help so much.
Izzy, have you every tried acupuncture for pain or gastroparesis or dysautonomia ? I think your audience would benefit from your experience with acupuncture if you ever have the chance to get treatment from an experienced, astute practitioner. Your videos are very well done. Thank you for sharing.
Done the pillow thing all my life. Started doing it due to the bruises i'd wake up with from body parts being pushed against each other while I slept. Then found it helped with both comfort and joint pain to be able to wrap my limbs in pillows. Still havn't solved the neck or side sleeping shoulder pain though. No "height" of pillows seems to fit right and I turn over so much that no one height works anyway. I tend to sleep on my side a lot of the time trying to get my neck and head in a more comfortable position, but this seriously hurts whatever arm i'm sleeping on. Can feel it pushing the shoulder out of join. I don't dislocate that easily, instead getting more of a partial dislocation where it just isn't fitting in joint correctly or I can feel the tissue tearing. Both hurt like hell, taking weeks to months to heal. Still no actual diagnosis but given my research in the last year hEDS or HSD are the most obvious diagnosis. I also have Autism and ADHD, and honestly think the Autism is the only reason I don't run into more pain management issues. Seems to make it easier for me to ignore bone pain. Spoken with others with Autism and this seems to be a fairly common side effect, that we develop more of a tolerance for some types of pain. I do use pot or cbd. It absolutely helps me, but then i'm treating the Autism, ADHD and whatever this joint hypermobility disorder is; as well as depression. All are currently believed to benefit from medical pot or cbd.
I’m enjoying learning about EDS from you. And I’m putting pieces together. A year ago I fell in my house-actually tripped on a toy and ripped my Achilles’ tendon nearly clean off. The docs asked how it happened to me as I wasn’t a major league basketball player. I’ve got fibromyalgia, osteoarthritis and other stuff. Knees caps out of place and chronic pains. I’m 65 and I always ask about EDS and docs tell me my skin isn’t stretchy like eds. I’m hyper mobile and can still do the splits. I’ve got tmj, ddd, djd and to me that says EDS. Izzy what do you think?
i don't know! so hard to tell because some people are just hypermobile in addition to having their other issues. i would definitely keep bringing it up at ur doc appointments to hear different doctors' opinions! :)
You don't necessarily have to have stretchy skin! Have you showed the hEDS diagnostic criteria to your doctors? ehlers-danlos.com/wp-content/uploads/hEDS-Dx-Criteria-checklist-1.pdf Good luck! :)
Izzy you are a remarkable young woman. You have so much information and sharing with others out of your heart. I want to thank you. Thank you for bring your conditions to light as I had no idea. I have fibromyalgia, I know pain too but as myself I'm like you keeping it positive. Have you tried weighted blanket My son has MS and and myself with fibro have found it very helpful. I don't always use it but he does. :) Many prayers to you.
I swear by pillow supports-- i have so many size and shape pillows, and I also have stuffed animals i use to support my lower back or my neck, since my head tends to feel too heavy for my neck to hold up. I also take duloxetine and it has worked wonders for my persistent depressive disorder but has not done anything for my pain, unfortunately :( Definitely going to try the underarm pillows and using ice more often!!
I do pretty much all these things. KT tape all over me today and splinted my one finger because it’s starting to turn to one side. I’m going to ask my rheumatologist about those meds though, cuz the methotrexate does nothing. The THC though, if you’re still afraid of it; I had a bad experience when I was first getting the dosage right, but it helps me sleep like nothing else! Might be worth trying again if your sleep is screwy. I haven’t had any more bad experiences.
yey for pillows. I am a big fan of the bean bag style of pillow, supportive and also it warms with your body warmth so unlike wheat bags or hot water bottles 1. no refilling and 2 u can put it anywhere n no risk of it bursting. I want to find an option to support thumbs n wrist for washing up and for unloading the washing machine, can't use metal splints with washing up gloves but REALLY need them when I have to load my joints when doing those tasks.
Late to the party but I feel so seen. I sleep exactly like that. I thought the constant movement was ADHD (that might be part of it) but I get so stiff if I dont.
I have eds and have found Valor essential oil from Young Living is really good for my shoulder, collar bones and atlas that used to sublux or dislocate daily. With Valor every day on my Atlas, neck, collar bone and shoulders, I don't sublux it dislocate hardly at all. They actually call it chiropractor in a bottle. Great stuff. I also use essential oils for pain, my favourite is called Panaway by Young Living, it is similar to the Deep Blue cream you use. I am considering braces, I've always been told not to use them as they encourage muscle wastage, but as I'm getting older it's getting worse and I feel I need support. I'm also purchasing a power chair soon as I find walking far extremely hard with hip, knee and ankle subluxations and dislocations and I can't push myself around in a normal wheelchair as my shoulders and fingers will dislocate. I've never really been one to go to the dr but as my pain and injuries are getting worse as I get older I'm considering going to the dr and seeing if I can get onto some kind of pain management program. Argh it's so hard and especially hard at the moment. Your videos are really good, I've been enjoying watching them.
Life is hard sometimes because I can't really take any meds because I think I also have MCAS. I can ignore it most days unless I get a new sublux or dislocation. Sometimes I don't know how bad I am until my pt touches me and I jump 10 ft.
Interesting, it's mostly what I use too. I have very bad nerve shoulder pains that can give pain also in whole arm to fingers. I have water therapy and physiotherapy twice a week, which helps a lot with the pain. I also use a lot of warm water bottle on my shoulders (just fill it with warm water). If it's not enough I use some essential oil gel, that have a cooling/tingly sensation. I used to wear braces on my wrists, but I've been off them for quite a while now. And surprisingly I take the same medicine as you lmao. I do take Duloxetine too, both for both antidepressant and nerve pain action. (though it makes my eyes super dry and sensitive to light, been wearing sunglasses ever since I take it) When the pain just is not manageable I take pills that have both paracetamol and codeine.
I love your videos, this is definitely super helpful. I actually was looking for alternative pain relief options earlier today. I actually officially got diagnosed with HEDS last week, I was also diagnosed with a stomach ulcer last week. I am quite positive that the stomach ulcer was caused by my many years of taking way too many nsaids. Now that I have had to stop taking those, I have found my pain is pretty bad, and I have no really good alternatives to treat it. I used to take excedrin or goody's for my extremely frequent headaches which is the only thing that really helped. Now the only option is tylenol and that just doesn't cut it. I will have to try the pillows under the arms thing, since I have pretty bad neck pain.
definitely try the pillow thing and let me know how it goes!!! i honestly think i might have an ulcer bc i took so many nsaids after the surgery (like 12-18 every day for 3-4 weeks) and i keep feeling like my stomach is eating itself and it's so painful until i eat and take an antacid. hoping it goes away so i dont need to see a doc about it
@@IzzyKDNA I hope it goes away and isn't anything serious, I am sure you don't want to have an endoscopy any time soon. Hopefully being off of nsaids for a while will help too. I have taken nsaids daily for sometimes months to years at a time for a very long time. I had to stop taking them last year after my neck surgery for about 6 months. I did fine then because my neck and head were feeling a lot better. Sadly, the relief I had from surgery was very short lived. So as all the issues have came back, I had started taking them again. Then last week I was told to stop taking them. So now I have been in more agony than usual since tylenol just doesn't help. I am afraid to take the prescription antacids because too many people in my family were stuck taking them after that started taking them. I really don't have many symptoms from the ulcer that I have noticed. I still may need to do a gastric emptying test, I don't know on that one yet. I guess we will see what they do when the biopsies come back.
I wanted to like Deep Blue, but ended up having BAD allergic reactions to one of the oils in it. My dispensary has a natural tiger balm type topical with a one to one thc/CBD ration and that one works far better for me.
Ugh! Yes! My neck, shoulder and JAW!!! I got Botox shots in my jaw & I could just KISS dr. Chopra for recommending that to me!! It cost me $400 (total) to get a shot on both sides of my jaw, but it’s been the most effective pain reduction I’ve experienced, this far! My last round of shots worked for 3 months! It was amazing! I just got another round of treatment, and I just wish all meds and therapies were as effective as this!
"I've been dealing with chronic pain for so many years, I honestly don't even remember what it's like not to be in pain" ...Same girl...13 years now. .God bless you
❤❤❤
11 years now (im 16)
For me, it's been about 11 years. I'm 14.
Fro me it’s been 2 years but it feels like it’s been ten but I don’t remember what’s it’s like to not be in pain
I genuinely don’t think I’ve gone a day in my life without some sort of pain somewhere. I’m 21 years old.
the most annoying thing i experience (besides the pain) with hEDS as a 15 year old is :
*you dont look sick"*
*"its just growing pains/hormones"*
*"your too young to have joint problems!"*
*" quit attention seeking"*
and the one that takes the cake:
*" have you tried yoga?"*
im still in the process of diagnoses, still, *three years, in pain.*
your videos have helped me a ton! please keep it up, this is my only form of support at the moment ;v;
Thank you she is not sick at all to happy maybe a regular back pain but not chronic at all
Yess like they always say “have you tried …” and then they say the most basic things that you’ve tried a long time ago
“Have you tried yoga” drives me genuinely insane…
I feel your pain, figuratively! I'm 53, & I can't say it'll get better soon, but once others start experiencing their own health problems, they'll start to get it. A lot of your peers won't catch up to you for many years. Talk to elderly people--they were always thrilled to find a young person (when I was in my 20's) who would listen to them. You'll feel understood, & they'll feel heard.
Hey..I diagnosed with EDS just few months ago..I myself doctor, took 8 months to made the diagnosis. It was too out of my hands. I was suffering with multiple bone pains, fracture, bruising,dental pain.people told me .u r just fatty..u need to lose weight..u look absolutely fine. Finally, after spending too much money and time, I came to know I have EDS.
Your opening line is, word for word, the exact phrase I have used for years to explain my Chronic Pain too.
hahah i totally explain it this way all of the time!
@@IzzyKDNA It's the most brief way to give people some perspective.
@@STABloid I dont have this illness, and i cant even begin to imagine what it must be like but all i want to say it that Jesus knows your pain, and he understands it. We live in cursed, sin filled, fallen world, that is why some hurt more than others, but Jesus is always there to rescue us from the pain we face each and every day. Have you ever heard a song called "one day at a time?" it has helped me deal with the pain and hardships the devil throws at me. I realize that Jesus Christ is my only hope and that if i continue to trust in him, that he will deliver me from my pain day. Christ has suffered on the cross so that we may have health, and more importantly, happiness.
"....And by His stripes we are healed"
-Isaiah 53:5
All we need to do is ask in Jesus Christ name believing that He hears us.
I bless you in Jesus Christ name,
I will be praying for you
@@irisydavidmendezguerra7731 Well there's nothing like some god-botherer to barge in on a conversation about some important issue, like chronic pain, & spew the same old superstitious bilge with no regard for the people that his message was supposedly meant for. The Bible is an old book full of myths, tribal warfare & religious fanaticism, a toxic relic from a time before humans began to investigate reality in a systematic fashion (it's called "science". Read up sometime, it's fascinating stuff).
As a history buff who suffers from chronic illness every day, I can tell you that one thing that _doesn't help at all_ is when some True Believer starts preaching his doctrine. It is not helpful; in fact it's obnoxious, annoying & useless for improving the morale of any thinking person. Buzz off.
@@irisydavidmendezguerra7731❤
I recently had an upper back injury that hurt 24/7 for 2 or 3 months. Not as physically painful as mentally painful - a discomfort constantly stealing your attention away from the minute you wake up.
It humbled me. People with years long chronic pain are warriors.
the “im not sure if it actually helps or if i just think its helping” is so real😭✋
I've always naturally changed positions too I just thought I was fidgety! 😂 but it does help 🙈
I use ice and heat, massage, essential oils, stretching and exercise, tens machine, cupping, braces and splints, and I take paracetamol, ibuprofen, gabapentin, amitriptyline, tramadol and oramorph.
Wow so is my daughter she is 8 years old shes on amitriptyline paracetamol nurofen got tense machine massager cold pack hot patch but nothing is helping and shes in constant pain all the best
My mom take oromorph too and paracetamol and ibuprofen during the day mostly
billieblue Sheepie
Thanks for your tips, took a schreenshot! ♥️
I...I just use ibuprofen
@@randomcrapstudios8398 try a combination of ibuprofen WITH paracetamol,it helps much better
I want to add in baths with epsom salt! There is a sport healing salt mixture that I love as well as some other magnesium salts or soothing bubble bath mixtures that have been a lifesaver for me on tough days.
i love epsom salts! i don't use it a lot but i totally should have included it in this video!
Yes! I use epsom salts and/or magnesium salts in bath and just relax. I will often have an easier day the day after painwise. 😊
Yep i love Epsom salts, they make a concetrated Epsom salt rub too that actually works wonders for pain!
Charlene B
Thanks for your tips, took a schreenshot! ♥️
i loveee dr. teal’s melatonin bubble bath, it has epsom salts and essential oils so it relaxes your muscles and your mind and it’s so pleasant before bed, because it leaves your skin soft and your muscles relaxed and it has a really nice scent, and i have extremely sensitive skin and it doesn’t irritate me at all!
I think it's sad what's going on right now with doctors denying us who have chronic pain the properly treatment we need.
thans for this❤️😍
i’m 13 and i have much pain but my parent don’t believe me.
i asked if i could go to the doctor but they just said no.
the day i’m faking it and if i have eds or hds my joint would pop out/sub lox more but my joints do but i never tell them and this video really helped me❤️🔥😍
😥😥😥Did you talk to your teacher? Or any médical assessor at school?
My girl is 12...and she is in constant pain...
I am praying for you hun. Hope your pain stops your young
I’m sorry for your experience with your parents. I had leg pain when I was young and I was also ignored. I found hot baths worked for me. As for your situation, keep asking to go to the doctor. Tell your doctor about your chronic pain and other symptoms. He or she will help you. Until then, stop eating animal products and focus on a whole foods plant based diet if you are able.
I have hypermobility (not as severe as yours) and the leg rolling thing has always been with me! I can't really stand with my weight distributed properly on my foot for the same orthopedic reasons. People always acted like I was doing it on purpose as a kid and I realized seeing you talk about it that I've always seen it as a personal deficiency... Same with my difficulties with exercise all my life, which I now think are due to hypermobility orthopedic issues and possibility POTS. The adults around me really treated me like shit for not having the "good attitude" that would have magically transformed me into an athlete.
It makes me so mad to realize how gaslit I was, and sad to the extent that I didn't believe myself and my own pain. But also I'm happy to have the occasion to see all those experiences through a properly nonjudgmental lens.
I feel this HARD. Am watching this in bed, kept awake from the pain of my subluxed ribs and hip. I'm seeing my GP tomorrow, but right now I'm exhausted and aching...
You shouldn't pop whenever you breath.
I got my pregnancy pillow a couple of years ago and I can't sleep without it! If I move around too much and push it out of place, I definitely notice a difference in my pain levels the next day.
This heat wave has my pain acting up bad but I start pt tomorrow morning wish my luck.
Thepopstarpanda same- the heatwave had been brutal on my pain. And I also start pt tomorrow!
Another EDS'er dealing with the heatwave chiming in. Definitely haven't been using my heating pad any with the heat.
I'm leaving the bath full of water! Don't care how cool it gets, it's a relief at the moment. Now have to contend with over sensitive eyes. Sitting in dark places is my only relief.
Charla Perkins I actually have been using my heat pads, but we have AC so as long as I’m in the house I’m ok. And supposedly niw with this rain- assuming you’re on east coast too? The heat has broken and today is in 70s. Yay!
Jo Bell the heat bothers my sensitive eyes as well. 😂
Does your pain get worse at night? I know my hip pain starts acting up more when im about to fall asleep
Yes man.my doctors say cuz before bed ur body is more relaxed
my hip pain is the absolute worst when i’m about to fall asleep or when i have to sit upright for prolonged periods of time. try putting a pillow between your legs like she suggested, and if it bothers you while sitting i always put my legs up a little bit, and bend them at the knee, or i also tend to slouch and straighten them out a little more, as the 90° angle is extremely uncomfortable to me (slouching is probably not good to do because it isn’t the best for your back but it alleviates my pain a little bit so i do it anyway)
@@clairbby1123 thank you so much. I found my solution. I put a heating pad and a pillow in between my legs. It helps a lot.
My hip pain is absolutely horrible at night
yes
Really useful video, thank you. I too am in chronic pain and have no recollection of what life was like before! Thanks for all the ideas, I will be saving this one!❤
Love the tip to use pillows for support in certain positions so the muscles don't have to do the work.
the pregnancy pillow looks soooo comfortable omg
I have one and they are so worth it!
There was a lot of good information in this video. I was skeptical about the benefits of essential oils as well, but I get a lot of severe tension headaches and I have found that an essential oil blend made by Twig and Petal (which I order on line) has almost eliminated my headaches completely. I have it diffusing in my office all day long (I work long hours as a medical transcriptionist) and it has been incredible. I don't know if headaches are a problem for you, but if they are, I would highly recommend this. You can also rub it on your neck and temples. It also smells amazing.
Which blend do you use? I'm not sure if I can get this brand in the UK but knowing the blend I might be able to duplicate it at Neal Street
@@jobell7356 It's peppermint, cajaput, lavender, rosemary, eucalyptus and vetiver. I order it on line as you could in the UK. It's made by Twig & Petal and called Headache Relief.
Do you work as a medical transcriptionist from home?
For me tiger balm is amazing ,but it's so greasy lol
Can you give specific information on the blend? I’m a chronic migraine sufferer and I also have EDS and fibromyalgia. I’d love to try it out. So glad you have had success with something!
I use pillows for support, too! I really like the little pillowy stuffed animals Five Below carries called Squishmallows. The stuffing is soft, and they're small enough to prop up where I need them. Plus it's nice just to have something cheerful if you're in pain. :) Hope you're getting better every day!
!! We have three squishmallows and we use them mostly as pillows instead now! They are legitimately SO soft and properly fluffy
That's so neat! :) Looking around online I've seen others mentioning using them this way, too! It's so nice to have something that helps and also makes you smile.
I LOVE my squishmallow cat pillow!! I want to get more! They're the best!
It's so interesting to see how some of us have found the same thing that helps. :)
Pillows are the best but sometimes they aren’t enough to help the pain
I use narcotic pain meds. I take one in a high dose that lasts 24 hours, as well as some for breakthru pain. I used to hate it so so much and then my doctors said why should u be so miserable if u don't have to.
I also have a medical service dog, along with a heart monitor under my skin. I'm getting a pace maker and feeding tube on Monday.
Depression is my worst enemy.
guardians animal rescue/ state certified 501c3 i wish more doctors were like that
Jose David Mendez while ur comment is true,! Many require medication for depression. God created doctors for a reason. Most of the time we need them to heal.
Which narcotic do you use?? Dilaudid?My mom uses that one and it also lasts 24 hours ,but she is on a very low dose
guardians animal rescue/ state certified 501c3 what’s a high dose one ? Thank you I take opioids but only get a few so I have a couple of good hours .
Frances Gillotti I have a patch since I cannot absorb thru my stomach. I use my feeding tube for breakthrough pain.
I had a bad THC experience but when I tried it again around trusting caring people and had a better experience now it’s super helpful
Such a brave & strong girl.
Thanks for these videos. It keeps me company in a way, and makes me remember I'm not really alone when I'm lying in bed in pain. I just can't get up today, I'm on my pillow pile with my heating pad just going through my YT watch list. Kinda sad really, its snowing and I want to go out and see it, but it's probably the cold snap that has done this to me.
This vlog is great for me to learn from but can’t stand fibromyalgia pain especially after doing gym
You have fibro & you work out??
If you're serious then you have more willpower than most of us...my worst condition is Meniére's & I haven't done a workout in _years...._
such a helpful video! I started dealing with serious chronic pain this year, but looking back I can see symptoms of chronic joint pain and issues throughout my life.
Your advice on dealing with pain is helpful, I’ve been dealing with chronic back pain for a long time now
You’re a beautiful strong person very admirable your strength is legitimate
Izzy when you mentioned Advil not being good for.you but you take it when it's really bad, please I can not stress this any more than I am, please be careful with that medication. Any pill with Naproxen, Ibuprofen or Aspirin products in them can lead to SEVERE damage to your stomach and esophagus, I should know because I did take that medication for a long time for my chronic pain because doctors didnt want to prescribe anything else, and now I'm paying the price for it, I have damaged my esophagus and stomach, and the damage is irreversible.
You are scaring me. I have several injuries,surgeries, fibromyalgia and take meloxicam, before that high Doses of motrin for about 27 years now.
So sorry !
I watch this video whenever I have a chronic pain flair up. I was diagnosed with hEDS this year... It took over 30 years for me to get a diagnosis and one year after finding out my identical twin sister was diagnosed with the condition. They didn't believe that my twin sister had been diagnosed so I had to print out her letters (she was diagnosed by two specialists including professor Rodney Grahame). I went privately in the end (I live in the UK). Thank you for all the awareness you spread as it helped me in my journey to diagnosis. Xxx
Pillows! ♥️✨💖. Thanks this was a great overview!
These are good tips. I like that you started with the medication-free tools first. You have such good ways to manage your pain. Thank you for educating people on what helps you!
So glad you made this video, I'm always looking for ideas on how to handle pain! I wholeheartedly recommend Stopain (they have it at CVS, I swear by that stuff, no other topical has helped me as much as that one). For me when pain is really unbearable it's often a sudden onset so I have trouble thinking straight, so what has helped me a lot is having a list of pain fighting measures from least harmful (heat or cold, stopain, etc.) to most harmful (pain meds, at least harmful to me as my kidneys have suffered over the years). So that way I don't have to think too much, and I can work my way through my list and see at what level I get relief. Idk if that makes sense, but maybe it helps someone. Love your videos, Izzy! Also, more kitties, please :)
love this idea. hahahaha i will def show more kitties!!!!!
"like a really strong baby fist 👊" 😂😂😂 that's a site to see
my lovely mom gives me a massage quite often for my pain ❤️ i am 13 years old and doctors suspect i have EDS. I search “how to help EDS pain” when i’m in overwhelming pain, such as right now and i love your videos!
Omg, thank you for the pillows under the arms thing for neck pain!! I’m going to try that next time but I didn’t know that was a thing!
Great stuff! Thanks for sharing! I’d like to add what’s helping my pain for hEDS and that is- Low Dose Naltrexone (LDN). I’m at 2 mg but you can go up to 4.5 mg. It’s safe to use, it’s anti-inflammatory and it does give you energy! You can also take it while pregnant and it helps to prevent miscarriages in studies! It has made all the difference in my life and has been essential, especially during flare ups and while TTC! Hope this helps someone!!
You young lady are the only one that has given me good ideas for my pain! Thanks.
You are suffering I know because I have Ed's but you still find time and precious energy you truly are a good person
A lot of those things help me with my pain too. I tend to have more pain in the winter time, that’s why I try to stay in. I go outside and it’s too cold my body starts to hurt and we had a fire in February I’m glad Michael wasn’t home, anyway I didn’t have a jacket on, or socks temperature is 20° I was so cold and so sight that I thew up... ew what helps me is a nice warm shower, breathing exercises, I do sometimes take acetaminophen, and I’m constantly moving around in my wheelchair. Speaking of WHEELCHAIRS you look absolutely adorable in you manual wheelchair. Nice seeing you again. See you soon you’re friend James
The McMillens
I JUST started using a foam roller a few days ago. It is surprisingly helpful! I've had chronic, constant pain since 2014. I had a spinal that seemed to go perfectly fine, until the numbing effect wore off. The pain stayed.
Jesus Christ can take away your pain, for ever. With Jesus Christ ALL things are possible, whatever might seem impossible or even unimaginable for doctors and science is possible for an Almighty God. He formed you in your mothers womb, he can have complete control over you sickness if you want, all you have to do is tell him that you desire his purpose for your life. You are beloved, Jesus is calling you to his arms, run to him for he is LOVE.
"Let the morning bring me word of your unfailing love,
for I have put my trust in you.
Show me the way I should go,
for to you I entrust my life."
- Psalm 143:8
Christ's love NEVER fails, he died for you so that you can have happiness and everlasting life!
czcams.com/video/o7Sru47J8Z8/video.html
I encourage you to watch this video about Gods plan for you!
Thank You I have something to pass on to my podcast listeners.
Thanks for the under arm pillows idea! My neck is KILLING ME right now!
I have chronic pain and I also have EDS, too. I can only take ibuprofen or Tylenol because of my medication that I take to control my Epilepsy. And I can’t use a TENS unit. I have used a heating pad before. I also use icy / hot or bengay it’s a cream to help with pain management
This video made me miss my my brace collection. When I moved I miss placed all or them I changed jobs so I don't have to take the with me every day. Although I had bad ankle swelling/slipping fun and I just my feet shrunk again so I have tight leather boots I got from a Army surplus store, great ankle support not much padding. I find it interesting how common heds is but until recently I spent more time explaining what it is to doctors. With this move most I have seen at least know what it is if not how to treat it.
Thank you for sharing this with us. Sometimes u feel alone. I do have good Drs now. I'm sorry u have pain. I❤
I’ve never even thought of using pillows to keep my body in line. Thanks for sharing!
I have POTS and heat intolerance, so I have to just use ice packs. I get a massage once a month,I do yoga and foam roll too. I love that doterra cream too,it's like natural icy hot. I also absolutely love my adjustable bed too,cause before I was having to sleep on 3 pillows which is not good for my neck. Im going to have to invest in thay massager for sure. I have to use compression socks and braces too. Thank you for this video, it's so refreshing to hear from someone who goes through the same stuff as I do,cause I'm sure you know dealing with Chronic illness can be so lonely. I hate being stared at when I have to use my walker or wheelchair
Thanks for your videos, I find them really validating because I think I have a habit of denying what I'm going through. But I see so many similarities.
So incredibly helpful to hear from someone who actually deals with the pain themselves. Thank you for sharing! I took notes and look forward to giving your tips a shot :)
Oh dear I also have the problem of constantly moving and trying to find a good position! I have about 5 pillows in my bed and all of them get used😂
As for medication I take LDN (low dosed Naltrexone) which my doctor recommended to me and it works wonders! 😍 oc I dont have no pain but its gotten so much better with LDN! Highly recommend this😊
my doc has suggested LDN to me. I've thought abut trying it but right now my pain is managed decently well with duloxetine, at least enough where i can manage, and if i want to start managing it better at any point i think that might be my next choice!
I just found your channel. Trying to overcome chronic pain myself
Thank you so much for this! I have pretty unmanaged muscle and joint pain. I use a lot of icy hot and muscle rub lotions. My whole family can smell it throughout the entire house 😂
This is actually really helpful.
Distraction is my favourite pain relief, not found meds that help much yet, but a good video game can make it way less stressful (if I've got energy and mobility to play)!
I have really bad nerve pain in my neck and shoulders, and the under arm support is instantly giving relief. I'm using a small blanket and I'm wrapping it around, have it tucked under my right shoulder blade that is always dislocated, and I have some elbow support too. What a jigsaw puzzle! Thanks for figuring that trick out!! It might not take five hours of adjusting to get to sleep tonight. Maybe just four now. :p
You are so young to be dealing with this. My painand partial hip dislocations didnt start until my 30s. Now I am 46 and its hitting me hard in my left hip, knee and ankle. I often wonder why I didn't have issues when I was younger.
Massage is amazing ♡ I foam roll too. I recommend shiatsu. Essential oils are amazing, I recommend ylang ylang, lavender, wintergreen, menthol, camphor.
Thanks for this video Izzy :)
You're great. Your fans love you. Hope you get completely better someday.
thank you!!
Hey I was just put on duloxetene a couple weeks ago! At first when one of my drs suggested it to me I internally rolled my eyes because I am so sick of drs throwing antidepressants at chronic pain patients as if it's a proven solution (heads up: with the exception of a couple, antidepressants have not shown to be any better than a placebo when it comes to treating pain), but I'm actually kind of feeling hopeful about this one because I'm only like two weeks in and it's already helping me sleep!
chronicallyvegann you will never be able to stop it . I weaned down and ended up in hospital screaming 😱 it’s poison.
Really? Sometimes I forget to take it for a week and i feel fine
My doctor starting me on it recently too. I would’ve felt the same way as you but he explained to me why he thought it could possibly help (which it does to a point just not much) which was because some of my pain is nerve pain which might be why your doctor recommended it. I don’t know how recent your comment was but I hope it’s helping and I hope you’re doing well :)
I love the ending of this & how you express yourself!! Very similar to me, both in your action and reaction (to yourself)… 100% the way I act 🤣🤣 I adore your personality! 💕😘
CBD has done wonders for me. Thanks for sharing.
I was diagnosed with AMPS, and this helped me. Thankyou!
Hi, I have PoTS, fibromyalgia and RA. I am currently really struggling with a pain flare. I wanted to say THANK YOU for this video, especially for the pillows under the arms suggestion. My fibro targets my left shoulder, jaw and ribs. My RA is basically making all my joints hurt. Stuffing pillows under my arms has been a huge relief and I had never thought of it before!
I usually use heat for relief but I think my PoTS is out of control and causing me to feel super hot like I have a fever so using my heat pad is miserable. Currently have an ice pack at my lower back and it is helping a bit. I need a bigger ice pack!
So, thank you so so much for sharing your experiences. I really appreciate it x
Hey Ive got ehlers danlos type 3 as well, and I never thought of using pillows to stabilize my legs so thanks for that. I have also just recently started using cbd oils, and creams and they really seem to help a lot and have also found its not so much the company as much as it comes down to which strain was used to make it. Just a heads up though the best thing you can do for pain management is to work out, the stronger you can get your muscles, the more they will help to keep your joints in place, I havnt had a single dislocation in 3 years, which is quite amazing considering I used to dislocate my shoulders while sleeping a few times a week. I also try my best to keep active, I', 28 and have stayed away from wheelchairs and other assisted devices by keeping my body as healthy as it can be.
Thank you for sharing your story, it was very helpful. I dont have EDS, I was misdiagnosed by the same doctor (yes I changed doctors, lol) TWICE and now I have chronic joint inflammation and pain. Im going to give some of your ideas a try. Thanks again, be blessed always
All pain is worse at night ,it's awful ,you can't get rested
Yes, it's bad at night, but for me, the most brutal time is the morning.
I use Deep Blue too! I found the way it works best for my body is to buy the essential oil blend and mix it in my favorite lotion. I find it is also a better value that way too. Great video! 😊💕
Your video was awesome! In the beginning when you say you have been in pain for so long you don’t know what it’s like without it , know this is someone who knows what it’s like to be in serious pain. The Doterra cream has the same ingredients as mentholatum (think Vics Vapor rub) but vics is a lot cheaper.
My pain is not from muscle or bones but from my pancreas. It is an internal pain that is crippling and is 24 hours a day 7 days a week. I use a combination of liquid hydrocodone and gabapentin which allows me to be able to live my life enough to do my own laundry and prepping my meals which are liquid. I also use meditation and conscious dreaming to help with being able to function. The pain meds cause me to be very sleepy and I sleep 6-8 hours a day. Even though you and I have a different kind of pain, I really enjoyed your video because it made me feel like I wasn’t alone in my pain. Thank you for doing these videos.
It sounds like you have found some tools that help you. If you are interested in more please contact us. takecouragecoaching.com/about-take-courage-coaching/
bad THC experiences are often from sativa strains, if you feel like you want to start using it again i definitely suggest indica, as it doesn’t give you that specific type of “high” feeling that causes you to dissociate (or at least causes me to). sativa is often used for chronic pain bc it tends to be higher in THC but just in case you wanna try it out again that’s just my recommendation !
I use all these and haven't heard someone put words to them before. Just got diagnosed with EDS
Have you heard of Body Braid? I constantly use kinesiology tape or braces for support and had multiple surgeries by 18yrs old.
I related to this video sooo much! Especially about the pillows! LOL!
Thank you for your Video explanation and the links in your comments huge help 🙏
Massage and *HOT BATHS* are heaven for chronic pain. I don’t have a tub at my current apartment, so no soaks for me. But I cannot wait until the day I can take warm baths again. They help so much.
Heat and cold pads work *sooo* well, but EDS’ body temperature control issues kills it :,-(
Izzy, have you every tried acupuncture for pain or gastroparesis or dysautonomia ? I think your audience would benefit from your experience with acupuncture if you ever have the chance to get treatment from an experienced, astute practitioner. Your videos are very well done. Thank you for sharing.
Marta Long I’ve been in chronic pain for 12 years and acupuncture has helped me so much!
Done the pillow thing all my life. Started doing it due to the bruises i'd wake up with from body parts being pushed against each other while I slept. Then found it helped with both comfort and joint pain to be able to wrap my limbs in pillows. Still havn't solved the neck or side sleeping shoulder pain though. No "height" of pillows seems to fit right and I turn over so much that no one height works anyway. I tend to sleep on my side a lot of the time trying to get my neck and head in a more comfortable position, but this seriously hurts whatever arm i'm sleeping on. Can feel it pushing the shoulder out of join. I don't dislocate that easily, instead getting more of a partial dislocation where it just isn't fitting in joint correctly or I can feel the tissue tearing. Both hurt like hell, taking weeks to months to heal. Still no actual diagnosis but given my research in the last year hEDS or HSD are the most obvious diagnosis.
I also have Autism and ADHD, and honestly think the Autism is the only reason I don't run into more pain management issues. Seems to make it easier for me to ignore bone pain. Spoken with others with Autism and this seems to be a fairly common side effect, that we develop more of a tolerance for some types of pain. I do use pot or cbd. It absolutely helps me, but then i'm treating the Autism, ADHD and whatever this joint hypermobility disorder is; as well as depression. All are currently believed to benefit from medical pot or cbd.
I’m enjoying learning about EDS from you. And I’m putting pieces together. A year ago I fell in my house-actually tripped on a toy and ripped my Achilles’ tendon nearly clean off. The docs asked how it happened to me as I wasn’t a major league basketball player. I’ve got fibromyalgia, osteoarthritis and other stuff. Knees caps out of place and chronic pains. I’m 65 and I always ask about EDS and docs tell me my skin isn’t stretchy like eds. I’m hyper mobile and can still do the splits. I’ve got tmj, ddd, djd and to me that says EDS. Izzy what do you think?
i don't know! so hard to tell because some people are just hypermobile in addition to having their other issues. i would definitely keep bringing it up at ur doc appointments to hear different doctors' opinions! :)
You don't necessarily have to have stretchy skin! Have you showed the hEDS diagnostic criteria to your doctors? ehlers-danlos.com/wp-content/uploads/hEDS-Dx-Criteria-checklist-1.pdf Good luck! :)
It sounds like hEDS to me. Check with a geneticist.
Izzy you are a remarkable young woman. You have so much information and sharing with others out of your heart. I want to thank you. Thank you for bring your conditions to light as I had no idea. I have fibromyalgia, I know pain too but as myself I'm like you keeping it positive. Have you tried weighted blanket My son has MS and and myself with fibro have found it very helpful. I don't always use it but he does. :) Many prayers to you.
I swear by pillow supports-- i have so many size and shape pillows, and I also have stuffed animals i use to support my lower back or my neck, since my head tends to feel too heavy for my neck to hold up.
I also take duloxetine and it has worked wonders for my persistent depressive disorder but has not done anything for my pain, unfortunately :(
Definitely going to try the underarm pillows and using ice more often!!
I do pretty much all these things. KT tape all over me today and splinted my one finger because it’s starting to turn to one side. I’m going to ask my rheumatologist about those meds though, cuz the methotrexate does nothing. The THC though, if you’re still afraid of it; I had a bad experience when I was first getting the dosage right, but it helps me sleep like nothing else! Might be worth trying again if your sleep is screwy. I haven’t had any more bad experiences.
I like the doterra deep blue as well
I knew the second you put your hands behind your back that it was EDS lol
yey for pillows. I am a big fan of the bean bag style of pillow, supportive and also it warms with your body warmth so unlike wheat bags or hot water bottles 1. no refilling and 2 u can put it anywhere n no risk of it bursting. I want to find an option to support thumbs n wrist for washing up and for unloading the washing machine, can't use metal splints with washing up gloves but REALLY need them when I have to load my joints when doing those tasks.
Late to the party but I feel so seen. I sleep exactly like that. I thought the constant movement was ADHD (that might be part of it) but I get so stiff if I dont.
I use a hand held electric massager for stiff muscles! I could dm u a pic, if u use it alongside a heat rub i find it so effective!
how is duloxetine for nerve pain...please tell me i have to try something..because i have severe pain...
I don't know why but combination of ibuprofen and paracetamol helps me a lot,like literally only them together
What type of pain you have.
@@dr.premlatadangi3676 neck and jaw joint pain ,plus a little bit of shoulder pain
@@Србомбоница86 you have to visit pain manegment doctor as early as possible.do not let late.
I do every single one of these... My tens unit has also been helpful, although I currently cannot find mine and need to replace it.
I have eds and have found Valor essential oil from Young Living is really good for my shoulder, collar bones and atlas that used to sublux or dislocate daily. With Valor every day on my Atlas, neck, collar bone and shoulders, I don't sublux it dislocate hardly at all. They actually call it chiropractor in a bottle. Great stuff. I also use essential oils for pain, my favourite is called Panaway by Young Living, it is similar to the Deep Blue cream you use. I am considering braces, I've always been told not to use them as they encourage muscle wastage, but as I'm getting older it's getting worse and I feel I need support. I'm also purchasing a power chair soon as I find walking far extremely hard with hip, knee and ankle subluxations and dislocations and I can't push myself around in a normal wheelchair as my shoulders and fingers will dislocate. I've never really been one to go to the dr but as my pain and injuries are getting worse as I get older I'm considering going to the dr and seeing if I can get onto some kind of pain management program. Argh it's so hard and especially hard at the moment. Your videos are really good, I've been enjoying watching them.
canabis is the only thing that really seems to help me.
Thank you, this is so helpful
so glad to hear that!!
im new here! I like you! I have Lyme disease... I dont have the same issues as you exactly but I feel like I can use these tips
Life is hard sometimes because I can't really take any meds because I think I also have MCAS. I can ignore it most days unless I get a new sublux or dislocation. Sometimes I don't know how bad I am until my pt touches me and I jump 10 ft.
Only way I survive is with a message gun. 54 now.. chronic pain since 16. gets rough now with loose neck joints... good luck.
Interesting, it's mostly what I use too.
I have very bad nerve shoulder pains that can give pain also in whole arm to fingers.
I have water therapy and physiotherapy twice a week, which helps a lot with the pain.
I also use a lot of warm water bottle on my shoulders (just fill it with warm water).
If it's not enough I use some essential oil gel, that have a cooling/tingly sensation.
I used to wear braces on my wrists, but I've been off them for quite a while now.
And surprisingly I take the same medicine as you lmao.
I do take Duloxetine too, both for both antidepressant and nerve pain action. (though it makes my eyes super dry and sensitive to light, been wearing sunglasses ever since I take it)
When the pain just is not manageable I take pills that have both paracetamol and codeine.
I love your videos, this is definitely super helpful. I actually was looking for alternative pain relief options earlier today. I actually officially got diagnosed with HEDS last week, I was also diagnosed with a stomach ulcer last week. I am quite positive that the stomach ulcer was caused by my many years of taking way too many nsaids. Now that I have had to stop taking those, I have found my pain is pretty bad, and I have no really good alternatives to treat it. I used to take excedrin or goody's for my extremely frequent headaches which is the only thing that really helped. Now the only option is tylenol and that just doesn't cut it. I will have to try the pillows under the arms thing, since I have pretty bad neck pain.
definitely try the pillow thing and let me know how it goes!!! i honestly think i might have an ulcer bc i took so many nsaids after the surgery (like 12-18 every day for 3-4 weeks) and i keep feeling like my stomach is eating itself and it's so painful until i eat and take an antacid. hoping it goes away so i dont need to see a doc about it
@@IzzyKDNA I hope it goes away and isn't anything serious, I am sure you don't want to have an endoscopy any time soon. Hopefully being off of nsaids for a while will help too. I have taken nsaids daily for sometimes months to years at a time for a very long time. I had to stop taking them last year after my neck surgery for about 6 months. I did fine then because my neck and head were feeling a lot better. Sadly, the relief I had from surgery was very short lived. So as all the issues have came back, I had started taking them again. Then last week I was told to stop taking them. So now I have been in more agony than usual since tylenol just doesn't help. I am afraid to take the prescription antacids because too many people in my family were stuck taking them after that started taking them. I really don't have many symptoms from the ulcer that I have noticed. I still may need to do a gastric emptying test, I don't know on that one yet. I guess we will see what they do when the biopsies come back.
I wanted to like Deep Blue, but ended up having BAD allergic reactions to one of the oils in it. My dispensary has a natural tiger balm type topical with a one to one thc/CBD ration and that one works far better for me.
Are there people here with chronic pain and also a full time job ? Since if have CP I lost efficiency at work, I'm scared it will never come back
Ugh! Yes! My neck, shoulder and JAW!!! I got Botox shots in my jaw & I could just KISS dr. Chopra for recommending that to me!! It cost me $400 (total) to get a shot on both sides of my jaw, but it’s been the most effective pain reduction I’ve experienced, this far! My last round of shots worked for 3 months! It was amazing! I just got another round of treatment, and I just wish all meds and therapies were as effective as this!