Big Life Update! New Pain Meds, Summer Camp, and Fundraiser!!

[@Laundrey1]

I know this is an older video but I just wanted to say how much (through all your videos that I've seen) your outlook helps me. I have those bad days where I wonder if life is worth living. I know it is because I have a wonderful family and I'm here for a reason. I hope to have a better outlook on life and you're encouraging me to do that. :)

[@lexi7773]

I take Tramadol 3 times daily. I take it for chronic back pain after back surgery. It is such a blessing. It's been 7 years and is still working . Good for you for finding the Dr. Who prescribe it for you.

[@faithcooper8935]

I wish I would have known about it when I was that age. I have JRA and never met anyone with it. It made my teen years lonely

[@sheilareynolds3755]

Ive taken Tramadol, max dose ,everyday for many years now for fibromyalgia. It doesnt eliminate the pain, but helps me cope.

[@MeghanSpann]

You are so gorgeous! I am trying to watch your videos to see what your illness is, I can’t even imagine what you go through just by watching your “day in the life”. You are truly amazing. I am also a youtuber and you INSPIRE ME!!

[@jamieritter7801]

I was on tramadol for 7 years at the beginning it worked great then eventually I had to take just to not get widthdraw symptoms from the tramadol, and had to replace with a medicine to help with widthdraw from tramadol it was horrible for me but I am cheering you on girl!! The tramadol gives you energy to it least it did me, but if I didn't take my tramadol my body would go into width draw so just be careful girlie!! Good luck and I love your channel!!

[@Marjolein339]

Have fun at camp!

[@greeneyes12346]

Love hydrotherapy!!!!!!! Gabepentin is a hit or miss, but I have heard of good things. I know two very close people to me that use it and it works well for them.

[@annam9047]

Glad to hear your pain is better! Even some improvement is amazing! I hope it only gets better from here! I know for me, I have fibromyalgia, and any time I get to try something new and it improves my life, even a little, it's such a blessing!

[@Yeshualovesyou83]

I had tramadol once but it makes me sleepy, and now with my ashma i can't have it anymore. I have fibromiyalgia IBD and Ashma

[@lilbritt4403]

You go girl. You’re so amazing and inspirational, I also deal with chronic pain because of my birth defect condition “Spina Bifida”. Love watching your videos, please do them at your own pace. No one should expect you to over do it, especially if it’s detrimental to your wellbeing. Keep striving for personal success and quality of life, it’s my goal too! Ps Hello from Australia!

[@gkostuck98]

I went to a summer camp for rheumatic diseases called darthmouth hitchcock I also went to summer camp for kids with serious illness called double H ranch super experience! Now I am working at a camp called cub creek science camp that I was also a camper at! Hope you have an amazing time!

[@christinadoherty3212]

Girl I am cheering you on!!! Good for you for finally getting some relief and getting active! That is HUGE! This is the other side of the “opiate crisis” that needs to be talked about. (Not that tramadol is a super strong one). 💜

[@raquelhernandez2239]

I’ve taken gabapentin for many years and I had pain that was so bad I lost the ability to walk and wheelchair bound thanks to that drug I can Now walk and have a quality of life my nerve damage is Manageable

[@phoebebrunt5971]

I’m so glad that things are moving forward for you! Sounds like a great pain management plan, and the camp and fundraiser sound like such good things to look forward to :) Really appreciate seeing your blogs whenever you’re able to do them x

[@jroostah]

Gabapentin works for me for my carpal tunnel pain. Not 100% gets rid of it, but like you've said, gives me a better quality of life.

[@Corey-qu8fx]

I have fibromyalgia and it’s a consent battle to figure out which medicines work for me. I also have 2 herniated disk in my neck. Physical therapy helped but only the massage parts lol. I took gabapentin and it made me feel “high” I slowly increased my dosage over a couple weeks and when I hit my max dose I was driving and had to pull over and thankfully my bf was in the car. I could barely stand and walk it was very scary. I fell asleep in the car for about an hour and then felt normal but I didn’t take it since. Another side effect is weight gain if that is something that appeals to you though. Good luck to what ever you decide! I’m a new subscriber and have been binge watching you’re videos and you’re such an inspiration! Keep it up girl!!

[@katherinebrenner7377]

Tramadol works really well for me too. I get an injection of that almost every time I need pain meds in the hospital.Toradol has also been a good pain med for me when my pain is more mild. But because it is an NSAID I can’t take the oral version because of my gastroparesis (I don’t have EDS but I still have gastroparesis).

[@jenng3649]

Fellow EDSer here. I take Gabapentin and it has worked wonders for my nerve pain and helps with other pain as well. Fatigue was my biggest hurdle, but it got better. Wishing you all the best!!! ❤️🦓

[@leerfarmer]

Congrats on summer camp, hope you have toms of fun!!! I hope Tramadol works really well for you, as I can not take it, something about an allergic reaction.

[@missD1998]

No need to apologize! Life comes first. Take care of yourself, that’s what matters. I have EDS too, and you definitely make me feel less alone, so thank you for that. 💕

[@smeadgoblin9634]

I'm so glad you found a pain med that works and I'm really happy for you to get a donation! I'm on pain meds as well, I'm on a different kind for different problems. I'm also on a lot of other medicines. But your videos make me super happy and not feel so alone.

[@chloeleigh8619]

I've tried gabapentin and it worked well for me! The key for me was to increase my dose super slowly. I'm also seeing a doctor this week for a consult about LDN and I'm excited about the possibility of better pain management. I'm glad you've got doctors who are willing to try different approaches :)

[@carolgoode7692]

Yes€Amazing! I just adore you! God bless you sweetie!

[@jfro3685]

Say "NO" to Gabapentin! Or please use with caution. Sending you all good and positive prayers. Stay strong 💪 and keep fighting. ❤️

[@jfro3685]

Enjoy camp!!! 🎉

[@meaganwhite7201]

Im so happy you might be able to go to camp!!! Congrats on 4k!!!!!!

[@SarahSmith-dx5kk]

I have taken gabapentin and the biggest issue I have noticed is memory loss. My short term memory was absolutely terrible. I hope you start to feel better. You should also do a Q&A where we get to ask you questions! I think that would be really fun

[@graysonj.8235]

Thanks for these videos, I love your personality and you are so sweet and amazing!

[@jennamarie9276]

I know that this video is about a month old but I wanted to touch on the gammapemtin. Me and my mom have both been on it for different reasons, and it has done pretty good for us. I was on it for a year when I was younger (like 9/10 or something) and honestly I have had so many issues I don’t remember why I was on it 😂 I do remember I got an EKG + blood work every 6 months to make sure it wasn’t damaging my heart or liver. My mom was on it for 3/4 years for uncontrollable muscle movement and leg pain caused by Multiple Sclerosis and it did wonders for her. She recently went off of it because it isn’t good to be on it for that many years and it was not really doing anything for her anymore. Overall it did work for the both of us, it just wore off after a year or 3.

[@penelopepolinsneemeyer4757]

It’s lovely to see the sparkle back in your eyes sweetie. So glad that Tramadol is working for you xxxxxxxxxxxxx

[@IzzyKDNA]

Hey! I have EDS, gastropareiss and suspected POTS and MCAS. I'm also in constant pain and only 20. I took gabapentin and it helped a bit but it made me dizzy and made me hungry, though my stomach could still only tolerate a small amount of food. So instead of being in pain and feeling full after a few bites, I was in pain and still hungry hahahah. sucks. I am currently taking duloxetine (cymbalta) instead and it has been amazing!!! The next option for me is LDN, which I may or may not start on top of my duloxetine. Hopefully, gabapentin works for you, but if not, I've heard great things about LDN and also duloxetine.

[@SharpLife4]

Posting is hard. Your doing great. Even for me I can barley upkeep videos but I post for my family and memories of road trips and such. Love looking back

[@chroniclesofabrokenperson2600]

I sooooooo understand! I'm so sorry you have been struggling so much, but I'm thankful you finally have some relief. Tramadol has helped me as well. Great news about the fundraiser and camp! I hope you get a lot of others to join you. And don't apologize! It's great that you don't have as much time for good reasons. Go experience life, and have some real smiles!

[@swiftyoverfifty]

Sadly, morphine was the only thing that helped me be more active. I have Marfan and I also have dislocation/injuries. I crack and pop when I walk. Lol. Noisy! Tramadol doesn’t do anything for me. So interesting how it affects us all!

[@kaileyaschemeyer594]

I am Kailey and I am 14. I hope u are doing well and that u are able to get your pain into even better control. I am someone that deals with undiagnosed chronic illnesses. I am super grateful that it isn’t as bad as your illnesses. I am lucky enough to go to school but I miss a lot and it is challenging. I deal with getting sick a lot and for long periods of time but my daily complaints are bad joint pain and having no energy. It is really hard trying to stay close to friends when u can never hangout. Besides that I just wanted to thank u because I found your channel when I was going through a bad health period and u helped me realize that I can still have an amazing life and do amazing things even though I am sick. U are so pretty and such an amazing person I really wish I could meet u and I just can’t wait to see how far u go in this world and I hope your health starts getting better.

[@leaver2007]

i have a LOT of unexplained chronic pain so i take a slow release version of Tramadol and it works wonders most of the time i hate taking fast release Tramadol coz it makes me feel sick and woozy.love from Australia

[@ghosttoast7]

Don’t worry about it. Life comes first so take care of yourself❤️❤️❤️

[@samanthajester3312]

What if you get a hip replacement? I'm sorry if this is a stupid question

[@SharpLife4]

If you tolerate tramacet then gabspentin will be fine for you. I react to tramadol and gabapentin cause they are similar. Effexor low dose also helps with pain

[@agmc2209]

Tramadol is an opioid, gabapentin is a tryclicic antidepressant. Its used for seizures as well. Amitriptyline and lyrica fall into the same category. Theyre nothing like opioids, and they like to use them for nerve pain. These kinds of meds cause bad reactions in our EDS bodies. Were not supposed to be on them. But doctors still keep trying.

[@SharpLife4]

Ashley Gibson tramadol is not really a narcotic actually. It actually is very similar to gabapentin in that it works on the serotonin on the brain. Same concept. Gabapetin is actually safer than tramadol that’s a very In safe drug in my opinion. Low dose naltrexone is far better. Or even things like Effexor which isn’t ideal but helps with some pains and such or nsaids like volteran

[@shelleylondry1265]

I can relate to the tummy problems! I barely eat, but cannot lose weight because I'm insulin resistance being a type 2 diabetic! It's horrible....I'm praying for you! Talk to your doctor about Nucynta, it's in the Tramodol family, just way stronger...BUT there isn't any major side effects and since they work on different parts of the brain you won't even know you are taking them! I had to go through horrible withdraws quitting Roxicodone down to Nucynta! I've been on Nucynta almost a year and it's the BEST decision I've ever made! I also take Gabapentin and its worth the risk of side effects since the drug REALLY WORKS! It took me about 3 months for my body to get used to it! Naltrexone cannot be taken with any kind of pain pills, you'd have to give your Tramodol!

[@swiftyoverfifty]

We all sure have lovely fingers! Your manicure is beautiful! Sorry I keep posting! I just find you so fascinating! My mini me!

[@madison8568]

For me I also have chronic pain due to my EDS also from dislocations (150+ times a day between all my joint and my right shoulder has been dislocated for 4 years straight almost), then also dystonia, and some arthritis/bone pain (even though I am only 18 MRIS I did almost two years ago show my shoulders are destroyed). So I have taken methadone twice a day for about 5 years, then flexeril (muscle relaxer) 2x a day, and Benadryl 3x a day. Luckily my pain doctor has been great and even though methadone long term isn’t a great thing it gives me a life and lets me live life. Also like you nerve pain medications have been completely ineffective for me as well. I am actually looking to an intrathecal pain pump because finding a pain doctor who will prescribe methadone as an adult is near impossible. An intrathecal pain pump is a pump implanted under the skin in the abdominal area with a catheter that is connected into the spinal cord and it directly pumps pain medication typically morphine into the spine. Since it skips the circulatory system and GI system the side effects are significantly less vs Oral or Intravenous medications. It is also way stronger in smaller doses since it is going into the nervous system. It is a procedure and if that works then a surgery but I am wanting to look into it because getting methadone is becoming harder and harder with many doctors not wanting to prescribe it

[@kaylaayla21]

The two people who disliked this video are obviously nuts

[@highhopes151]

Just a thought that you should know that I was on gabapentine (lyrica I think it's also called?) till the side affects got so bad and that it didn't really give me much relief so they said about pregabalin which is the same family of drug just has a lot less side affect, the change on to the pregabalin was so much better it really helped me alot with the pain and the brain fog I wasn't feeling sick and the other good thing that gabapentine had a limit on how much you can take which I still didn't get much relief from whereas with the pregabalin I was able to have a higher dose than the gabapentine which really made the difference I still had a bit of pain but just not the really bad pain I didn't get the feeling that I was going to be sick or even being sick. This really made a big difference from the gabapentine. Pregabalin really did make a difference so much that I could go out and spend more time being out I started back doing photography again as when I was on the gabapentine I had to stop as the side affects was so bad but with the pregabalin I could really start enjoying being like a normal person who could go out when I wanted to it also helped me to sleep better as the pain was not waking me up hardly at all. Maybe you could look into this to see if this would be better for you than the gabapentine. I totally understand what you mean about being in bed all the time as I am in bed all the time as I don't get so much pain unlike trying to be up in the living room. I am so happy for you that you have found something that helps you with your pain. I am really happy that you are going to be able to go to camp this year and I could see how disappointed you was when you couldn't go last year cause of being in hospital. I totally understand why you are cutting the amount of video's as I know how much work goes into making then editing and putting it up on here as I am thinking about starting a channel but I think that it might be to much for me at the moment but I think that i will just start practicing more on how to edit a video to see if I could do a video every few weeks? I love your channel video's and your family. Please take care and God bless you all lot's of love from me kelli xxxxxx

[@swiftyoverfifty]

Just curious... are you a swiftie?

[@SharpLife4]

Try low dose naltrexone. My Naturalpath says it’s the safest drug. Been around forever and drs forget about it because other drug companies try to sell other things. I also find help with toradol or volterin oral each day. Plus emtec that has codeine in it. But low doses. Volterin and toradol help the most. Thinking of low dose naltrexone. Naturalpath says I really should try it.

[@karenbell3911]

Mickey, gabapentin isn’t as scary as you might think. It’s helped me a lot with pain management. Give it a try and if it doesn’t work for you you can always stop. Xxx

[@Max_N]

I take tramadol as well. My mom is a pharmacist and she told my pain management team about it. I'm so glad it's been working for you. Sadly I'm still in constant pain even with the tramadol. The tramadol does reduce my pain enough that I'm not passing out from pain multiple times a day. I have been on several medications in the same family as Gabapentin (Lyrica , Cymbalta, etc.) They worked very well for my nerve pain but the side effects were too much for me. I became paranoid and started hearing voices that weren't there, I started having panic attacks and suicidal ideation. It felt like my brain was up in the clouds, everything felt foggy, hazey and thick. I was really out of it and it felt like everything was in slow motion. My doctor's and I decided that the side effects were too much to outweigh the benefits. I had to slowly titrate off the meds. You can't just stop taking them because you'll go into withdrawal. My mom had to open the capsules and count the individual beads of medication because of how slowly I need to titrate. That said, everyone is different. I'm so happy to hear that you have had an increase in your quality of life! Have fun at camp! For the past two years I have went to camp Brigadoon in Nova Scotia, Canada! They host a camp for kids with juvenile arthritis. On each week of summer vacation Brigadoon has a camp for a different disability or chronic illnesses. Thank you so much for sharing your life with us! I'm so appreciative of the time and dedication you put into your channel. You come first so even if you don't upload another video for months you still positively impacted four thousand plus lives! Stay strong, Max

[@shelleylondry1265]

Max Nodwell Check with your doctor & see if she'll try you on Nucynta 50 mgs 4 times a day! I was taking Roxicodone & Oxycotin for years and my pain just got worse..so I changed pain management doctors and I had to go through major withdraws in order to get the Nucynta to work, so after about 2 months on Nucynta I was like....OMG it works & ZERO side effects & I could just quit taking it cold turkey and have 96% No Side effects! I think the entire country should be on Nucynta, it would solve the overdose problem in the USA!

[@katk5205]

Omg the girl I shared a room with when I had my tonsils out had hers out too, and we were given Tramadol for the pain... turns out she was allergic to it and it made her super sick, so she was throwing up water and stomach acid over open wounds. She got morphine after that. Suddenly the fact that I was 15 and completely on my own didn't seem so bad. Until the boarding house forgot about me and I was stranded for a few hours the next day

[@SharpLife4]

Zofram helps immensely with nausea

[@LifewithErin777]

You made me cry, I can’t believe how strong your are!

[@abbykopp5898]

can u go even if u dont have eds

[@shaykayraycrochet]

I am so happy that you are getting to go to camp. My youngest son has Type 1 Diabetes, and he went to a specialized camp with nurses and doctors available at the camp 24/7 for the first time last year. He enjoyed it so much that we've already sent the deposit and paperwork for him to go again this year. I'm also happy about your success with Tramadol. I'm on Tramadol, too, for pain from surgical adhesion. Unfortunately, it does not help with my gastroparesis. My doctor did prescribe me Movantik which helps prevent narcotic-induced constipation, and it helps a lot. I have been on Gabapentin twice before, and also on Lyrica and Cymbalta, all of which are mainly prescribed for nerve pain. They didn't help me because my pain wasn't nerve pain, but I didn't have any bad side effects on them. If it were possible to have a mild case of EDS on just one side, I might have it, too. My pelvis goes cockeyed at the sacroiliac joint on my left side, and I had to give up on driving a stick shift because repetitive use of the clutch would cause it to go back out of joint. I've also dislocated my left shoulder (and had frozen shoulder), damaged the cartilage in my left knee while running, had tennis elbow in my left elbow, carpal tunnels in both wrists, and TMJ (on both sides of my jaw), broken two toes on my left foot as well as the long bone below my pinkie toe on my left foot, and broken the thumb on my left hand. Most of these really happened when doing stuff that most people would think are mundane and shouldn't end up causing problems. Most of these things didn't manifest until I was in high school and later, though, so probably not EDS or I would have seen it earlier. At any rate, I can definitely sympathize with the kind of joint pain you're suffering with your hip. They actually put me on Ultram (Tramadol) when I dislocated my shoulder, but only for a couple of weeks. It still cracks and pops, but thankfully, it doesn't hurt any more. I hope you'll have a wonderful time at camp! I'm praying for you to be able to keep your plans this year :)

[@oliverlikescats4736]

I'm also type 1 diabetic, and I went to diabetes camp as a kid. My camp was called Camp Kudzu and it was at Camp Twin Lakes in Rutledge, GA.

[@samanthajester3312]

Sharon Ray I saw Aspen from the Dale tribe go there too

[@TechGirl84]

Yay for adapted camp!!! I'm in a wheelchair full time, and I've been able to go to Camp PossAbility in Indiana for the last 3 years. It's awesome! It's actually for adults with physical disabilities. So you could come to Camp PossAbility next year when you age out of Camp Cambria. They aren't specifically for EDS or arthritis, but they are super accommodating for health needs. You can check them out at www.camppossability.org

[@Olivia-ud3yb]

I have Eds and pots and have taken both gabapentine and naltrexone (Sorry if I spelled those incorrectly) I take them in very low doses so it could be different for different people and different doses. For me at least they are not very effective for chronic or acute pain even though all of my doctors said they should be. I haven’t experienced any bad side effects and I’m pretty sure the side effects are fairly rare. It could be a lot different for you though so if your doctors recommend it I urge you to try it because everyone has different reaction to pain medication so it may not work for me but work wonders for you. There is really no way to tell. When it comes to the side effects I wouldn’t let something like that scare you because they have to mention them but they are extremely unlikely. Out of the hundreds of medications I have taken in my lifetime I have only ever had one dramatically bad side effect and it was solved by taking me off of a different med that wasn’t helping much anyway and it was just mixing bad with the other med apparently. So yeah just don’t let the side effects scare you from something that could potentially be life altering for you. Also I am having server brain fog while writing this so sorry if I said something over and over again. 😊😊😊

[@kolsalhtmac]

Try CBD it's not no side effects

[@dawnlaughlin4873]

HUGS!! So happy for you!!

[@georgemartinez4123]

How's was your Valentine's Day life an stripes stay strong loves take Care of yourself.

[@SamanthaEmi]

you're so stuunning