Oh my goodness, I am so touched! I need to give y'all a BIG thank you! Not even an hour after uploading, y'all have flooded me with uplifting comments and words of encouragement. It is SO refreshing to know others have been in a similar situation when it comes to treating chronic pain. I love how you are all sharing experiences and successes, but also acknowledging that we are all different. I appreciate you all SO much! My day is much brighter now, the support and connection to one another is so therapeutic!
The methocarbamol is a great muscle relaxer. I use it occassionaly and it helps greatly.i have RSD and it is very painful but this is one thing I use that helps.
Chronically Jaquie Rooting for You Jaquie. Hope with the grace of God and the help from your doctor's that You start feeling better asap. I have a question, regarding the CBD oil. Is there a recommended brand your Dr suggests? If possible can you post a link to the CBD oil you use please.
Irina Fanchon methocarbonsal works great I have scoliosis in my neck and have trouble holding my head because my muscles in my neck are weak so I take 4 methocarbonal a day also called robaxin it also helps with my other pain i take less mess because of it
I can't take narcodics and opioid pain medication due to adverse effects, I also have Ehlers Danlos. I use CBD on a daily basis and it really really helps my chronic pain. I also have gastroparesis and CBD if you take it orally it also has antinausea effects too which is a huge plus. I hope that CBD works well for you!
Hey, Doll. Sorry you're having the stomach issues. I agree with your pain doctor. You know how we are; we're always in pain, and we really don't know a life without that pain. Managed pain is easier to have a plan of care for, rather than undamaged pain. It is so much better to control the pain before it escalates. And you are so very lucky to have that pain doctor! Hang on to that one!
In regards to the CBD oil, keep in mind CBD works much better if there is a small amount of THC, not enough to cause psychoactive effects, just enough for the CBD to work at its full potential.
its just because thc triggers the body's natural cannabinoid system to release its own cbd along with the external which also helps it cross the blood-brain barrier
I am so glad to hear that your pain doctor wants you to be in less pain. I completely understand about not wanting to become dependent on pain medication but sometimes, it's necessary. You just had major surgery and your body needs to heal so it's completely understandable. Plus, if you take it only as needed, your body won't build a tolerance to it like it would if you took it everyday. I'm also glad to hear that he is giving you an IV muscle relaxer. I take an oral muscle relaxer for fibromyalgia and joint issues and it's called Norflex. It comes in an IV form, as well, so if your insurance doesn't approve the one that he sent in, maybe you could get Norflex? It's generic is called orphenadrine citrate and it works incredibly well. I took Flexeril before and it made me so sleepy but didn't really help with muscle pain at all. The Norflex helps and I'm still able to function without feeling groggy.
I have POTS and EDS too! Your videos really help me realize I’m not alone, and also give me really helpful tips! Thank you so much for making videos. You have no idea how much you have helped me learn to accept my chronic illnesses and grow as a person. 😊😊 Thank you so much!!💗
Thank you I needed to hear this today. I am a chronic pain warrior as well. I personally have been trying to decide what to do about my pain. I've tried many injections and none seem to work so far. I ended up making an app. with my pain management doctor today and am going talk with him about trying something new. I am a pharmacy tech and I truly just don't want to be on narcotics all the time for many reasons but mostly because I know what they do to your body. I've felt pressured by doctors to take them and finally found one that is willing to look outside the box to help me. You are an amazing person and I'm so thankful I found your channel.
Jaquie, your eloquence and tone is the most inspiring aspect of your videos. Regardless of circumstance or emotion you are able to communicate whatever you choose perfectly. Watching your videos reminds me of the emotional balance I need to maintain as a teacher for students with emotional and behavioral needs. THANK YOU EVERY DAY!
Chronic pain is so difficult to live with but I'm glad you have an amazing doctor to help you. I met with a total joint/pain management doctor on Monday and was diagnosed with the hypermobile form of EDS and I'm so happy to have found a doctor who knows how differently my body works because of this, understands my other chronic illnesses, and can find plans that work for all my needs. Good doctors can be rare when you have multiple problems so I love hearing about your amazing team and learning from your advice.
I have had chronic pain and fatigue for over 5 years, which for the most part, remains undiagnosed. Recently its gotten so bad (my muscles are so tense) that I can't do anything but lay in bed and cry without muscle relaxers. I'm not happy to be on medicine but I am grateful that I have something that helps me get through my classes. I've been having a hard time because I don't see the rheumatologist until March. Because I don't have a diagnosis it's hard for me to feel like I'm actually chronically ill. I really appreciate your videos and always feel validated by your words, even without a diagnosis. Sending love and prayers
Chronic pain is so is so so hard. A little bit of it is ok but it’s CHRONIC and just get so overwhelming!!! It really sounds like u have a great plan in place Jaquie, and I know things will work out for you girl!! Chronic pain has nothing on u 💪
I take CBD daily for the pain and swelling caused by my Hashimotos. I am more mobile, now, and have found that my severe dysmenorrhea is reduced significantly. It has also helped my husband with his migraines. Keep in mind, though, that it can take some time before you notice much of a change.
Your mom is such a sweetheart. I’m glad your doctors are on top of your care. I totally understand your pain and exhaustion it really does effect daily things. Praying you get strong and these things get managed so you can do more things. I use cbd ointment in too scared to try anything else besides the ointment but sometimes it help but doesn’t get that deep pain relief like I need. Please keep us updated on how your pain management works. I know you will and your always in my prayers. 🙏🏼
Medical Marijuana has helped me so much in my chronic pain management. I have many of the same illnesses as you, I really hope the CBD works for you because like you said it's natural and a much better option to narcotics.
Take strength, Jaquie- your body, mind, heart, soul and spirit are as one. They are a tapestry of wonder, and the more healing brought to each strand the brighter it shall shine. You are an inspiration to thousands, literally thousands of warriors in every shape and form. You glow, blessed with the glory-strength of God.
I highly recommend the cbd oil. I use a tincture (drops under the tongue) which helped to break the worst fibromyalgia flare-up I had ever experienced, about a year ago. It changed my life. I hope you can try it and see if it benefits you, too.
I'm sorry that you've been doing poorly, but glad your appointments went well. I wish you luck on your chronic pain journey! I'm also in the process of figuring out what works for my pain, so I'm right there with you!
Hi Jaquie, goodluck with the cbd. I have used it in the past for my pain and healh issues. Works well for my nausea vomiting and GI pain and discomfort. Hope you get some relief. I look forward to hearing about how it works for you. Positive thoughts and good energy sent to you all.
Best of luck babes! I have chronic EDS hypermobility class 1,2,3,4, &5. Luckily i dont have gsstroporisis. I just wish you were in the UK where we have free medical treatments, much wider awareness, support and help. And have nationwide support groups online and in the real world, and one of the founding charities, HMSA and EDSuk. All the very best. Ali xxx
Jaquie, Pain makes staying strong difficult, You are clearly not alone all your subbies are so supportive we love you and want what best for you. Yes we are all giving suggestions to help with your health & pain. Yes, all the advice & suggestions are coming form a good place we all care about you so much. Take it 1 step at a time. 💗 Sher & Stripe🐾
I have a friend who had stage 4 cancer and managed extremely well and even ate when he was on CBD oil. Please go for it you cannot keep living in extreme pain Jaquie girl!
Chronic pain has become just my normal after the past 6 years. I wonder sometimes what it even feels like to not be in pain anymore. Like I can't even imagine it.
I am so glad everything is working out with your j stoma, and that you have a plan to figure it out. Chronic pain is difficult to treat for many chronic illness warriors, including myself. I’ve been looking into trying CBD myself but I’m a little apprehensive of it just because anxiety. I think looking into it might help both of us. Hope today is restful for you. Love from Oregon ❤️
You did really well for such a high pain level day, you deserve to rest. I have gastroparesis as well as chronic ankle pain and I take an narcotic called tramadol, I find it really helps the pain but I have to take zofran because it makes me nauseous. I think narcotic medicine could help you a lot but it’s great that you have other options as well. Your channel is awesome and informative ( I wish this existed when I was diagnosed ) keep up the good work!
Hi Jaquie ! You are such a trooper! I have never known anyone with any of these diseases/syndromes. I really feel for you. You are so articulate and have taught me so much. I’ll never look at a service dog the same way again either ! You have a great mom & husband , and of course Harlow! What a great support system! Keep looking for answers and I’ll keep watching. Best of luck! ❤️
You are my inspiration.. I have so many things like you that haven't had the proper treatment quite yet.. But watching you gives me hope..one day at a time..
I was on methocarbamol when I was first diagnosed with lupus, dermatomyositis, and rheumatoid arthritis for my chronic pain and muscular pain. An it helped so much for my muscle spasms that I used to have. Now I'm on a different muscle relaxer that has to build up in your system doesn't work as well and I'm really thinking about talking to my doctor about going back to the the methocarbamol. I hope everything works for you stay strong!
Im glad to hear that you are figuring things out. I only found your channel recently so ive been catching up. I do not have chronic pain, but I do have Autism, and I also have a problem where I used to be constantly falling causing constant (could almost be chronic) injuries. I had a persistent knee & ankle (both right leg) that would give out at any given moment and i'd fall, and sustain injuries. I finally had them operated on, but still have the pain from a shattered and bent tailbone that cannot be corrected. But for my pain I did take the oral form of methocarbamol for a muscle relaxant, It did help for the spasams that would come after a fall. I hope that it works for you as well. You are so brave. and you have created such a space where those with injuries are okay to come to and discuss their illnesses, or injuries openly and dont feel weird, or crazy. Hope your J tube heals better. Take it easy!
Harlow is getting so good at working alongside your chair!!! You really are a wonderful team. I hope you're plan for your jtube helps over the next few weeks ❤
You are a warrior you got through that day like a champ! I’m so glad you have an amazing team of drs that understand and are compassionate about your conditions. What a blessing! I am a former Licensed Massage Therapist and my specialty was pain management. Have you heard of Formula 303? It’s worth a try. Unfortunately I can no longer practice my Ménière’s Disease progressed and 2 yrs ago I had no choice but to stop working. I’m thankful for you videos!
I'm currently battling severe muscle spasms as well so my medicine will probably get changed and I wish you luck with CBD I've been taking it in various forms for about 2 years now and I've had some success with it but you may have to experiment with different kinds I've tried 5 different kinds but I found one that works fingers crossed you don't have a reaction!
Really bad stormach problems atm so sorry for weird wordings im hunching over and cant really focus well, never commented before but have been silently enjoying your vlogs. You can do this, you have more strength in your little pinky toe than most people can bring up in their life. You will be able to find something to get you through the pain and live a more active life. You got this just like everything else you have already survived. You are a warrior. You inspire me and others so much. Please take good care of yourself. Greetings from the Netherlands, and lots of snuggles from my service dog! By the way, Harlow doesnt mind not going to the dog park for a few days, the thing she loves most is working for you and making sure you are okay. Sure its Nice to goof around and blow some steam, but she's a working dog and absolutely loves you no matter how many or little Times she gets to play in the park. All that matters to her is for you to be Happy. So be happy, with or without narcotics. Keep moving forward
I'd never heard the pain cup metaphor before! It makes so much sense. I definitely feel worse when I have an acute illness on top of my chronic pain. It's also interesting to me how able-bodied people think of quality of life based on their own standards, not understanding that we often need to measure our quality of life on a different rubric. I hope the CBD oil helps! I've been interested in trying some myself.
I started vaping CBD and it's helped me a ton! Vaping CBD gives you quicker relief but it leaves the body quicker. CBD has helped my gastrointestinal problems, anxiety, joint pain, headache, nausea; basically all of my problems. You should definitely try it.
Chronic pain warrior here ! I go to pain management twice a month, been on countless narcotics, and even though my bp is around 86/46, pain meds really didnt mess with it. But! They didnt help my chronic pain. Sometimes they did, but id end up getting massive migraines the next day. So then I was put on extended release. Didnt work. Then they put me on fentanyl patches. Nada. So I got my mmj approval and Ive gotta say- its the most effective pain killer with no motility drawbacks! So I’m glad you mentioned cbd oil! You can access that easily without prescription and I hope it gives you relief! I am off all narcotics now, just taking gabapentin and my medical cannabis! Its a chronic pain game changer.
so Thankful your Stoma is fixable! Another HUGE drawback to Narcotics is being allergic. I'm allergic to Demerol, I think personally there's waay to much risk and with all the other tools, your stoma healing and maybe cbd oil it would help. Yay falling..... your mom too funny
You are so positive, even though you have to deal with so much. I am sorry that you go through all this ...yet, I surely admire you and how you do life. Inspirational for sure.
Praying for you... Don’t pretend to understand what you are going through but I can sense your pain in a lot of the videos because I suffer from severe Intractable pain and can relate to a certain extent... Multiple types of constant excruciating headaches and other pain which all together are very difficult to treat... A lot of times it’s like torture...
Jaquie, I used CBD for my chronic pain. It has CHANGED MY LIFE. I live in Colorado, so it is easier to get here, but I know you can buy it online and have it shipped. There are tablet or tinctures/oils. I hate the taste, so I use the tablets. If you need any information, I have tons, just let me know.
You are amazing Jaquie I also am a chronic pain warrior and you are not alone I am having a very bad day today I deed with extreme pain and fatigue too. Lots of love xxxx
I totally get the whole frustration with finding things that work, and narcotic issues. Between genetic issues & MCAS, there aren’t any I can tolerate. Same with NSAIDs. I don’t know if anything I’m doing would help, but I figure it wouldn’t hurt to list out what works for me. High doses of fish oil & turmeric...it feels like my body is being torn apart if I miss these. CBD oil from Charlottes Web has helped some. I have some from Bluebird that I haven’t tried yet. I have a TENS unit which is also helpful. Mine is made by Zynex. I also have a home ultrasound unit from TENSPros.com. Don’t know if any of this helps, but I hope you find something that helps soon. It’s so nice that you share, since it helps me feel less alone. I spent the day in bed, recovering from our monthly trip to the supermarket.
I gave CDB treats to my 15 y/o toy poodle for his arthritis & general purposes & it really helped him. It practically turned him into an active dog again.
I take CBD for pain and I can say that it helps, it doesn’t so much help with my joint pain but definitely with the muscular pain that I get. I’m not sure what its like in the states but here in England you’re pretty hard pressed to get anything but non-flavoured and it tastes like you’ve just took a bite of mud (i have an oil and a paste that i put under my tongue 3 times a day, so I don’t swallow it but i do taste it) though I would say that that is the only downside to it (so long as you don’t have a reaction that is). In fact you just reminded me to take my evening dose! (Its 7:30pm here) :) hope you’re pain gets better soon :D
Jacquie, I was thinking you may want to try a Surgical Abdominal Support Binder and just alter for your J port & dangler tube. Just cut a hole for them to go through so you don't smash down on your new tube. But the abdominal support really helps hold you together which reduces pain & swelling It'a a wrap around band that velcros together you can tighten or loosen to give support hold the area where your surgery was. Usually after surgery the give you a abd. binder. Get your home health care company to get dr's rx and send one for your waist size. You can purchase these at Walmart, ect not to expensive brands Futuro, or Ace, The abdominal binder really help me after several surgeries. I do think cbd oil is worth a try its natural and tested and legal in all states. Thanks jacquie for sharing your life with us. For me you are like great friend that hasn't met me yet.💗Sher & 🐾Stripe🐾
Happy feeding tube awareness week... I'm also having trouble with my j tube and the Dr told me the same thing to keep rotating it.. my gastroparesis is not letting me eat nothing not even feeds.. plus the diabetes has my bs on the low side blood pressure also low and my anemia goes from 10 to 7. I'm having my appt w my pain management Dr next week for another session of steroid shots and epydural... glad ur doing so much better.. we will both make it thru this and the pain..
Praying that you know that to do. One of my best friends lost his family, job, wife and kids due to narcotic addiction. It is so hard when there aren't good options.
Butrans patches have worked really well for me and it is one of the few opioids that doesn't cause tons of degranulation. Voltarin gel helps me with some of the joint pain. I use Emla cream(sometimes I do fine with it and others it bothers me) to help desensitize some of the pain from my RSD. Domperidone majorly helped with the abdominal cramping and nausea before I ended up with intestinal failure. A spinal cord simulator and botox injections used to help with the pain and muscle spasms in my arm and neck with RSD. I started with severe gastroparesis and now have complete intestinal failure. All from my lovely MCAS ❤️(
I hope you can find some good solutions for your pain, and the methocarbamol and cbd oil work without negative side effects. As a fellow chronic pain warrior I understand how it is to struggle just getting through the day. My doctor prescribed Flexeril, it works but now that I'm at the maximum dose I have to go to pain management. Not fun, but far better than the alternative. I'll be praying you have days with less pain.
I'm so sorry your having so many problems right now. I absolutely love the way you always have a positive attitude! Methocarbonol is the only muscle relaxer that has ever worked for me. I hope it works for you! Good luck!
Jaquie, I have had symptoms since the early 90's but no doctor ever put my symptoms and a diagnosis other than fibromyalgia together. I know you have insurance, but this seems so expensive. I wonder how you manage to afford it. I know I dread any testing the doctors ask of me because of deductibles and co-pays. I want to thank you for educating us.
So glad that the stretching is fixable!! I also have a question about Harlow. How long do you usually leave her vest on at a time? You mentioned it was kind of a long drive, so was there certain a reason you decided to leave it on her? My pup loves working but only barely tolerates her vests.
Doctors who work around issues is helpful. My GI approved IV keppra for me since I was recently diagnosed with epilepsy. I take it orally right now or via my J tube but if I can't keep it down or absorb it we need a way for me to get it so having some on hand will help. I'd rather not rely on IV only meds but since I am on IV zofan and IV benadryl adding this one when needed will improve my abilty to control the epilepsy. If I have seizures I can't drive, if I can't drive I can't work (ER vet with some oncall shifts as well). Doctors who listen and work around things is fantastic.
Sending you good vibes, healing, and pain relieving superpowers! So onto something else to ponder on with your other doctors, are you able to have antidepressants and take your regular required medication? (Antidepressants and anxiolytic/antianxiety medications, for example Cymbalta/Duloxetine and others such as Amitriptyline etc have been used to manage pain even if the person does not show symptoms of a mood disorder etc). I was also wondering if you and your doctor (preferably doctorSSSS plural!) could make a really strong case for massage therapy to be more of a regular thing (I was thinking once a fortnight or on the week of the month you aren't doing your ketamine injections, IVIG, other specific appointments, plus prep a few days beforehand!) and covered by insurance. I have a long list of reasons why this is the better (or as far as insurance is concerned, cheaper) option than certain pain medications unless during a procedure, planned intervention/treatment, or if needed during an ER visit. You seem to definitely seem more relaxed, calm, and more able to actually breathe after you have a massage session (or at least you do in the vlogs that I've seen!). Massage also doesn't seem to cause too many interactions as far as medications, treatments, or symptoms/conditions are concerned. You have a better quality of life, infact I think that's an actual quote from you! I can think that the massage will not only help the lymph system to release, process, and remove toxins from the body, it boosts your circulation so that your IV fluids can access and enter the body's tissues and cells as needed on a much more efficient basis than before, so your motility might improve as a secondary add on. It has been proven in studies to improve the sleep of participants in both insomniacs and those with normal sleeping habits (the sleep has also been proven to be a deeper sleep than their normal sleep, and in the healing/resting type!). For those who can tolerate the contact part of it it has been proven to calm those with severe autism and carers/medical staff (some whom have minimal or no knowledge of the 'massage study' being done) have reported that those who struggle with touch sensations can tolerate it significantly better and/or for longer than previously. Since touch triggers what I call 'happy hormones', it will help guard you against mood disorders (such as depression and the horrifying life annihilating evil that follows them) that can come to those with chronic conditions and/or pain conditions. The 'happy hormones' are also able to reduce the blood level of stress hormones, and I think they also do that with the system that causes allergic reactions as well as improving 'healthy' immune response (and some studies show it even can assist those with autoimmune disorders to be less symptomatic!!). Also, if you are able to tolerate it, having a back massage (from about the breastbone down to almost the back passage -it feels weird to have someone around there but just focus on how the massage feels until it doesn't feel too weird any more, especially if you set boundaries beforehand!) seems to help my body move things to a place where I can visit the toilet, but used to help me with motility. I have also heard that an abdominal massage boosts motility as well as helps to ease nausea, bloating, indigestion, cramping/spasming, tenderness, trapped air and flatulence amongst other things! With the abdominal massage, some people swear that doing it in a certain direction is better than the other, some say both directions one after the other is better, and some say it's a massage who cares(!). I've not had personal experience due to it being too sensitive and/or painful to try, and I've not seen any credible studies with a decent sample size to say what is better. Although you can search youtube for videos on it, and most of the abdominal massages are kind of only moving the skin itself, and tends to focus in a ring around the belly button, a bit like if a tubie pad was scaled up (as if the belly button was the stoma site!). That's probably only a fraction of potential other reasons! Also, as offered before, if you'd like to have a vent (a chat one, not a gastro one! Teehee!) about things in order to limit your frustrations and what I call 'inner head arguments with yourself' (where it seems like you are arguing various points with one or more other versions of you, and tends to be either a back and forth argument or a circular one with no resolution or solution found), then the offer to do so is still there. Let me know if you wish to take it up. As an additional aspect, I do have the experience of chronic pain, and take a variety of pain medications through a variety of means (for example I take tablets, have transdermoplasters, use external gels and other things), as well as doing things to try and target a problem at the source. Finally (and for all those whom have read this far!!), I have my first appointment at a pain clinic in March (they sent me a book sized form to fill out! Grr!), and I'm kinda having a 'it's a new thing, so start panicing and being in a borderline random condition flare up to the point I will either miss the appointment, or the flare will end about 1 min before either my taxi arrives or my appointment starts!
I am so sorry you are battling pain. I know all too well how that goes! It's so hard, and with added medications, it's so hard to remember what I can take and when I can take it and if I can take it with something I've already taken! ARGH!! My Pharmacy now thinks I'm trying to get extra meds (which I'm not!!!) because I asked them to fill a muscle relaxer, and they already had filled it. I picked up the medication, but thought it was something else, especially since they changed manufacturers of the medication and I now have 3 medications that look almost identical! Now they won't fill two on my medications until Saturday. Fortunately, I have enough to get through, I just hate that they think that about me. I'll have to get past it. My Pain Management appointment is not until the 20th of this month!! I hope they can do something for me to get me off of some of these medications!
Hey Jaquie, I don't know if this is too personal, but I noticed you're not wearing your alert button in the past couple videos (but I might also be oblivious). Did you get your system worked out or are you going to go a different route? Also, would you recommend the system to others who need an emergency line?
Hope things get a little better for you soon! I start injections this week for pain and am a little nervous but seeing how strong you are has helped comfort me. Normally I wouldn't recommend anything medical because I know how frustrating that can be when you've tried everything but sometimes for car rides I use a HappyWrap (happywrapstore.com) which is a neck wrap filled with flax seed that you can microwave for an on the go heating pad. Just something that helps for me, thought I could tell you about it. I hope you feel better soon!
CBD can honestly do wonders for pain, sense you are highly sensitive to many things take your time and do a little research, you can get creams and lotions and pain rubs ect. But you will want to watch what is in each one as you are sensitive to many things, I had a slipped disk in my neck, I was on muscle relaxer, and steroids, and a high does ibuprofen and it didn't help, my friend gave me a CBD menthol rub and it was truly amazing!
I take methocarbamol three times a day. It helps. Baclofen never worked for me. I'm always looking for the right answer to pain management. I mean it when I say I truly feel your pain. Hugs!
I personally use cbd on a regular basis for both pain and nausea/appetite issues from cf and it has helped me so much..I've had a g tube placed and I believe the oil was one reason I healed like I did because the pain and discomfort from it went away so much quicker with it than before I took it..they also make cbd ointments and rubs that you can apply externally for muscle and joint pain as well as burns or minor healing wounds as well which again helps me
Hay, I use CBD for my Lupus, and it helps! I use Koi CBD, its all natural, and vary limited ingredients! and I got a joyetech AIO to inhale it. It has done wonders, it also smells good, and doesn't taste like much, but if you don't want to inhale it, they also have gummies.
I am so sorry your going through that. I have EDS and Gastroparisis too. My surgeon at UCLA actually took my stomach out instead of doing a tube. I am definitely not recommending that. I understand your suffering. Everything you have said I have tried. Pain killers, CBD and Bachlofen. Bachlofen actually helps me some so I am sorry it didn’t work for you.
My mother had fibromyalgia and chronic ehlers danlos type subluxes from Mercury poisoning and from medication side effects. I hope your pain isn't caused or aggravated by any of the meds you have to take and that you don't have any heavy metal poisoning. Medication side effects often include pain and dental amalgams are poison.
I've tried many muscle relaxers and had either bad reactions or they did nothing. The only one that has ever worked for me was Methocarbamol so hopefully it will work well for you too!!
I've been considering CBD as well. I'm worried about the side effects and it's also extremely expensive to get a kind with no THC from a reputable dispensary.
My rheumatologist wants to have me try a compounded pain cream. The problem I have is, I can't use it while taking my opioid based pain meds, which I have for Chiari Malformation that hasn't been decompressed yet. (I still have to wait for my disability hearing before I can get into a neurosurgeon.) You might ask about compounded pain creams. Also, Christina Dougherty has a awesome link and discount code for a great cbd cream.
I’ve been hoping to hear you would be prepared to try CBD as I’ve heard so many wonderful stories of how it has helped people with pain management. You are a lovely girl and it makes me sad to see you hurting so much; Please god you will get some relief from your pain soon. Sending hugs from Dublin, Southern Ireland 🇮🇪☘️.
I use both CBD and THC and they have been extremely effective at controlling my pain and now that I've had the optiin it makes me so frustrated that its always a last resort when it works better and has fewer side effect than regular pain medications
Oh that pup is so darn cute! I'm very interested to see how you get on with CBD oil. I'm on the brink of trying it but it's not something Drs really acknowledge in the UK. Glad you've got a plan for your stoma so it heals well :)
By the way, we are being prescribed neurological meds. Namely gabapentin or pregabelin.your pain consultant should be concentrating on enabling you with pain control. Non orals include morphine and fentanyl skin patches.
Well I’m exactly like you with pain I have MS and I started buying hemp sold as hemp tea. Full of CBD I vape it it’s by far out of all medication given works the best. It’s not illegal in many states it’s not here in the UK. CBD oils get a vape pen. I’m never ever high it works amazing.
I used CBD oil for a while as an anticonvulsant. I started out eating CBD lollipops but they became less and less effective over a period of about a month. After that I switched to putting oil under my tongue. It worked really well the first couple of times but then I had a terrible reaction to it. It made my symptoms severely worse. I know we are different people with very different medical problems but I thought my experience was worth noting.
I was on Robaxin (methocarbomal) for my fibromyalgia, it did definitely help. I only stopped taking it because it gave me a rash and aggravated my vertigo. I hope it helps you! I take cbd for my chronic pain now too, Charlottes web strain. It's really does seem to help.
You may have heard of that drug under the trade name Robaxacet. I take it for my back pain along with nerve blocks. Also on baclofen and tizanidine for my muscle spasms from a rare spinal cord disorder. Im on lyrica for nerve pain as well. I’m on narcotic pain meds too, it was a hard decision to take as I have GP and am tube fed too, but nothing was working. I still have some pain, as nothing is fool proof. Good luck, I hope the new med helps! You need relief, I know how hard it is to be in pain 24/7.
Can I ask what it feels like when your legs give out? I occasionally have falls and I think I get a sort of numbness for a moment near the skin but I'm not sure if it's from the EDS or some kind of anxiety response
Sending good vibes your way. I can't tolerate narcotic pain meds due to my stomach. I deal with pain, but it's manageable. Vick's Vapor Rub helps me, but I know you're pain is worse than mine.
CBD topicals have gotten me through many pain panic moments. I also use CBD mints for longer periods of pain. Please note though that they are not all equal. I tried 5 different topicals before settling on three I love. I hope you have as much luck with them as I have. You need to give your body a break .
Oh my goodness, I am so touched! I need to give y'all a BIG thank you! Not even an hour after uploading, y'all have flooded me with uplifting comments and words of encouragement. It is SO refreshing to know others have been in a similar situation when it comes to treating chronic pain. I love how you are all sharing experiences and successes, but also acknowledging that we are all different. I appreciate you all SO much! My day is much brighter now, the support and connection to one another is so therapeutic!
The methocarbamol is a great muscle relaxer. I use it occassionaly and it helps greatly.i have RSD and it is very painful but this is one thing I use that helps.
Chronically Jaquie we LOVE YOU!!!!! 💖💖💖💖💖💖💖
Chronically Jaquie Rooting for You Jaquie. Hope with the grace of God and the help from your doctor's that You start feeling better asap. I have a question, regarding the CBD oil. Is there a recommended brand your Dr suggests? If possible can you post a link to the CBD oil you use please.
Irina Fanchon methocarbonsal works great I have scoliosis in my neck and have trouble holding my head because my muscles in my neck are weak so I take 4 methocarbonal a day also called robaxin it also helps with my other pain i take less mess because of it
"Are you ok???"
"Yeah, my legs just suck at being legs" 😂
ROFL! Yup, pretty much me!
Me today. Having issues walking because i have numbness from waist down for some reason
Are you having snow or rain? Cold? Those things can affect me. (sp as well) I can't feel my legs unless I work them really hard.
Disney Gamer u mean u have sb im guessing?
yep. that was a last minute add in oopsy
I can't take narcodics and opioid pain medication due to adverse effects, I also have Ehlers Danlos. I use CBD on a daily basis and it really really helps my chronic pain. I also have gastroparesis and CBD if you take it orally it also has antinausea effects too which is a huge plus. I hope that CBD works well for you!
Sydney Kendrick CBD pills have been helping my nausea and cramping from GP as well.☺️
Hey, Doll. Sorry you're having the stomach issues. I agree with your pain doctor. You know how we are; we're always in pain, and we really don't know a life without that pain. Managed pain is easier to have a plan of care for, rather than undamaged pain. It is so much better to control the pain before it escalates. And you are so very lucky to have that pain doctor!
Hang on to that one!
In regards to the CBD oil, keep in mind CBD works much better if there is a small amount of THC, not enough to cause psychoactive effects, just enough for the CBD to work at its full potential.
Jillian Walker 100% This! I had such a jump in pain reduction when I found an RSO with a small amount of THC. I feel they work synergistically.
its just because thc triggers the body's natural cannabinoid system to release its own cbd along with the external which also helps it cross the blood-brain barrier
I can’t have the THC... makes me violently sick. BUT I LOVE my CBD. Pathological insomnia...
I am so glad to hear that your pain doctor wants you to be in less pain. I completely understand about not wanting to become dependent on pain medication but sometimes, it's necessary. You just had major surgery and your body needs to heal so it's completely understandable. Plus, if you take it only as needed, your body won't build a tolerance to it like it would if you took it everyday. I'm also glad to hear that he is giving you an IV muscle relaxer. I take an oral muscle relaxer for fibromyalgia and joint issues and it's called Norflex. It comes in an IV form, as well, so if your insurance doesn't approve the one that he sent in, maybe you could get Norflex? It's generic is called orphenadrine citrate and it works incredibly well. I took Flexeril before and it made me so sleepy but didn't really help with muscle pain at all. The Norflex helps and I'm still able to function without feeling groggy.
I have POTS and EDS too! Your videos really help me realize I’m not alone, and also give me really helpful tips! Thank you so much for making videos. You have no idea how much you have helped me learn to accept my chronic illnesses and grow as a person. 😊😊 Thank you so much!!💗
Thank you I needed to hear this today. I am a chronic pain warrior as well. I personally have been trying to decide what to do about my pain. I've tried many injections and none seem to work so far. I ended up making an app. with my pain management doctor today and am going talk with him about trying something new. I am a pharmacy tech and I truly just don't want to be on narcotics all the time for many reasons but mostly because I know what they do to your body. I've felt pressured by doctors to take them and finally found one that is willing to look outside the box to help me. You are an amazing person and I'm so thankful I found your channel.
Jaquie, your eloquence and tone is the most inspiring aspect of your videos. Regardless of circumstance or emotion you are able to communicate whatever you choose perfectly. Watching your videos reminds me of the emotional balance I need to maintain as a teacher for students with emotional and behavioral needs. THANK YOU EVERY DAY!
Chronic pain is so difficult to live with but I'm glad you have an amazing doctor to help you. I met with a total joint/pain management doctor on Monday and was diagnosed with the hypermobile form of EDS and I'm so happy to have found a doctor who knows how differently my body works because of this, understands my other chronic illnesses, and can find plans that work for all my needs. Good doctors can be rare when you have multiple problems so I love hearing about your amazing team and learning from your advice.
I have had chronic pain and fatigue for over 5 years, which for the most part, remains undiagnosed. Recently its gotten so bad (my muscles are so tense) that I can't do anything but lay in bed and cry without muscle relaxers. I'm not happy to be on medicine but I am grateful that I have something that helps me get through my classes.
I've been having a hard time because I don't see the rheumatologist until March. Because I don't have a diagnosis it's hard for me to feel like I'm actually chronically ill. I really appreciate your videos and always feel validated by your words, even without a diagnosis.
Sending love and prayers
Chronic pain is so is so so hard. A little bit of it is ok but it’s CHRONIC and just get so overwhelming!!! It really sounds like u have a great plan in place Jaquie, and I know things will work out for you girl!! Chronic pain has nothing on u 💪
I take CBD daily for the pain and swelling caused by my Hashimotos. I am more mobile, now, and have found that my severe dysmenorrhea is reduced significantly. It has also helped my husband with his migraines. Keep in mind, though, that it can take some time before you notice much of a change.
Your mom is such a sweetheart. I’m glad your doctors are on top of your care. I totally understand your pain and exhaustion it really does effect daily things. Praying you get strong and these things get managed so you can do more things. I use cbd ointment in too scared to try anything else besides the ointment but sometimes it help but doesn’t get that deep pain relief like I need. Please keep us updated on how your pain management works. I know you will and your always in my prayers. 🙏🏼
Medical Marijuana has helped me so much in my chronic pain management. I have many of the same illnesses as you, I really hope the CBD works for you because like you said it's natural and a much better option to narcotics.
Praying for a way to manage your pain! I know it takes such a toll both physically and emotionally. Hang in there, love! ❤️
Take strength, Jaquie- your body, mind, heart, soul and spirit are as one. They are a tapestry of wonder, and the more healing brought to each strand the brighter it shall shine. You are an inspiration to thousands, literally thousands of warriors in every shape and form. You glow, blessed with the glory-strength of God.
I highly recommend the cbd oil. I use a tincture (drops under the tongue) which helped to break the worst fibromyalgia flare-up I had ever experienced, about a year ago. It changed my life. I hope you can try it and see if it benefits you, too.
I'm sorry that you've been doing poorly, but glad your appointments went well. I wish you luck on your chronic pain journey! I'm also in the process of figuring out what works for my pain, so I'm right there with you!
Hi Jaquie, goodluck with the cbd. I have used it in the past for my pain and healh issues. Works well for my nausea vomiting and GI pain and discomfort. Hope you get some relief. I look forward to hearing about how it works for you. Positive thoughts and good energy sent to you all.
Best of luck babes! I have chronic EDS hypermobility class 1,2,3,4, &5. Luckily i dont have gsstroporisis. I just wish you were in the UK where we have free medical treatments, much wider awareness, support and help. And have nationwide support groups online and in the real world, and one of the founding charities, HMSA and EDSuk. All the very best. Ali xxx
Jaquie, Pain makes staying strong difficult, You are clearly not alone all your subbies are so supportive we love you and want what best for you. Yes we are all giving suggestions to help with your health & pain. Yes, all the advice & suggestions are coming form a good place we all care about you so much. Take it 1 step at a time. 💗 Sher & Stripe🐾
I have a friend who had stage 4 cancer and managed extremely well and even ate when he was on CBD oil. Please go for it you cannot keep living in extreme pain Jaquie girl!
Chronic pain has become just my normal after the past 6 years. I wonder sometimes what it even feels like to not be in pain anymore. Like I can't even imagine it.
I am so glad everything is working out with your j stoma, and that you have a plan to figure it out. Chronic pain is difficult to treat for many chronic illness warriors, including myself. I’ve been looking into trying CBD myself but I’m a little apprehensive of it just because anxiety. I think looking into it might help both of us. Hope today is restful for you. Love from Oregon ❤️
You did really well for such a high pain level day, you deserve to rest. I have gastroparesis as well as chronic ankle pain and I take an narcotic called tramadol, I find it really helps the pain but I have to take zofran because it makes me nauseous. I think narcotic medicine could help you a lot but it’s great that you have other options as well. Your channel is awesome and informative ( I wish this existed when I was diagnosed ) keep up the good work!
Hi Jaquie ! You are such a trooper! I have never known anyone with any of these diseases/syndromes. I really feel for you. You are so articulate and have taught me so much. I’ll never look at a service dog the same way again either ! You have a great mom & husband , and of course Harlow! What a great support system! Keep looking for answers and I’ll keep watching. Best of luck! ❤️
You are my inspiration.. I have so many things like you that haven't had the proper treatment quite yet.. But watching you gives me hope..one day at a time..
I was on methocarbamol when I was first diagnosed with lupus, dermatomyositis, and rheumatoid arthritis for my chronic pain and muscular pain. An it helped so much for my muscle spasms that I used to have. Now I'm on a different muscle relaxer that has to build up in your system doesn't work as well and I'm really thinking about talking to my doctor about going back to the the methocarbamol. I hope everything works for you stay strong!
Im glad to hear that you are figuring things out. I only found your channel recently so ive been catching up. I do not have chronic pain, but I do have Autism, and I also have a problem where I used to be constantly falling causing constant (could almost be chronic) injuries. I had a persistent knee & ankle (both right leg) that would give out at any given moment and i'd fall, and sustain injuries. I finally had them operated on, but still have the pain from a shattered and bent tailbone that cannot be corrected. But for my pain I did take the oral form of methocarbamol for a muscle relaxant, It did help for the spasams that would come after a fall. I hope that it works for you as well. You are so brave. and you have created such a space where those with injuries are okay to come to and discuss their illnesses, or injuries openly and dont feel weird, or crazy. Hope your J tube heals better. Take it easy!
Harlow is getting so good at working alongside your chair!!! You really are a wonderful team. I hope you're plan for your jtube helps over the next few weeks ❤
You are a warrior you got through that day like a champ! I’m so glad you have an amazing team of drs that understand and are compassionate about your conditions. What a blessing! I am a former Licensed Massage Therapist and my specialty was pain management. Have you heard of Formula 303? It’s worth a try. Unfortunately I can no longer practice my Ménière’s Disease progressed and 2 yrs ago I had no choice but to stop working. I’m thankful for you videos!
Many gentle hugs and prayers for you. Chronic pain is always a bear to deal with day after day.
I'm currently battling severe muscle spasms as well so my medicine will probably get changed and I wish you luck with CBD I've been taking it in various forms for about 2 years now and I've had some success with it but you may have to experiment with different kinds I've tried 5 different kinds but I found one that works fingers crossed you don't have a reaction!
I'm so glad to hear you're trying CBD! It has helped so many people.
Really bad stormach problems atm so sorry for weird wordings im hunching over and cant really focus well, never commented before but have been silently enjoying your vlogs.
You can do this, you have more strength in your little pinky toe than most people can bring up in their life. You will be able to find something to get you through the pain and live a more active life. You got this just like everything else you have already survived. You are a warrior. You inspire me and others so much. Please take good care of yourself.
Greetings from the Netherlands, and lots of snuggles from my service dog!
By the way, Harlow doesnt mind not going to the dog park for a few days, the thing she loves most is working for you and making sure you are okay. Sure its Nice to goof around and blow some steam, but she's a working dog and absolutely loves you no matter how many or little Times she gets to play in the park. All that matters to her is for you to be Happy. So be happy, with or without narcotics.
Keep moving forward
I'd never heard the pain cup metaphor before! It makes so much sense. I definitely feel worse when I have an acute illness on top of my chronic pain. It's also interesting to me how able-bodied people think of quality of life based on their own standards, not understanding that we often need to measure our quality of life on a different rubric. I hope the CBD oil helps! I've been interested in trying some myself.
I started vaping CBD and it's helped me a ton! Vaping CBD gives you quicker relief but it leaves the body quicker. CBD has helped my gastrointestinal problems, anxiety, joint pain, headache, nausea; basically all of my problems. You should definitely try it.
Chronic pain warrior here ! I go to pain management twice a month, been on countless narcotics, and even though my bp is around 86/46, pain meds really didnt mess with it. But! They didnt help my chronic pain. Sometimes they did, but id end up getting massive migraines the next day. So then I was put on extended release. Didnt work. Then they put me on fentanyl patches. Nada. So I got my mmj approval and Ive gotta say- its the most effective pain killer with no motility drawbacks! So I’m glad you mentioned cbd oil! You can access that easily without prescription and I hope it gives you relief! I am off all narcotics now, just taking gabapentin and my medical cannabis! Its a chronic pain game changer.
so Thankful your Stoma is fixable! Another HUGE drawback to Narcotics is being allergic. I'm allergic to Demerol, I think personally there's waay to much risk and with all the other tools, your stoma healing and maybe cbd oil it would help. Yay falling..... your mom too funny
You are so positive, even though you have to deal with so much. I am sorry that you go through all this ...yet, I surely admire you and how you do life. Inspirational for sure.
Praying for you... Don’t pretend to understand what you are going through but I can sense your pain in a lot of the videos because I suffer from severe Intractable pain and can relate to a certain extent... Multiple types of constant excruciating headaches and other pain which all together are very difficult to treat... A lot of times it’s like torture...
Jaquie, I used CBD for my chronic pain. It has CHANGED MY LIFE. I live in Colorado, so it is easier to get here, but I know you can buy it online and have it shipped. There are tablet or tinctures/oils. I hate the taste, so I use the tablets. If you need any information, I have tons, just let me know.
I hope that whatever decision you make for your pain management helps you feel better :)
my hubby brought home some cannabis five years after my accident and he said it was the first smile in years. ...
You are amazing Jaquie I also am a chronic pain warrior and you are not alone I am having a very bad day today I deed with extreme pain and fatigue too. Lots of love xxxx
I totally get the whole frustration with finding things that work, and narcotic issues. Between genetic issues & MCAS, there aren’t any I can tolerate. Same with NSAIDs.
I don’t know if anything I’m doing would help, but I figure it wouldn’t hurt to list out what works for me. High doses of fish oil & turmeric...it feels like my body is being torn apart if I miss these. CBD oil from Charlottes Web has helped some. I have some from Bluebird that I haven’t tried yet. I have a TENS unit which is also helpful. Mine is made by Zynex. I also have a home ultrasound unit from TENSPros.com.
Don’t know if any of this helps, but I hope you find something that helps soon.
It’s so nice that you share, since it helps me feel less alone. I spent the day in bed, recovering from our monthly trip to the supermarket.
I’m glad ur getting additional help for ur pain. We r all praying for you. Please feel better soon
I'm currently taking Mobic/Meloxicam for my pain and it is finally the relief I've needed all these years.
Your doctor sounds so knowledgeable, as a nurse I would love to pick his brain.
I gave CDB treats to my 15 y/o toy poodle for his arthritis & general purposes & it really helped him. It practically turned him into an active dog again.
I take CBD for pain and I can say that it helps, it doesn’t so much help with my joint pain but definitely with the muscular pain that I get. I’m not sure what its like in the states but here in England you’re pretty hard pressed to get anything but non-flavoured and it tastes like you’ve just took a bite of mud (i have an oil and a paste that i put under my tongue 3 times a day, so I don’t swallow it but i do taste it) though I would say that that is the only downside to it (so long as you don’t have a reaction that is). In fact you just reminded me to take my evening dose! (Its 7:30pm here) :) hope you’re pain gets better soon :D
Jacquie, I was thinking you may want to try a Surgical Abdominal Support Binder and just alter for your J port & dangler tube. Just cut a hole for them to go through so you don't smash down on your new tube. But the abdominal support really helps hold you together which reduces pain & swelling It'a a wrap around band that velcros together you can tighten or loosen to give support hold the area where your surgery was. Usually after surgery the give you a abd. binder. Get your home health care company to get dr's rx and send one for your waist size. You can purchase these at Walmart, ect not to expensive brands Futuro, or Ace,
The abdominal binder really help me after several surgeries. I do think cbd oil is worth a try its natural and tested and legal in all states.
Thanks jacquie for sharing your life with us.
For me you are like great friend that hasn't met me yet.💗Sher & 🐾Stripe🐾
Happy feeding tube awareness week... I'm also having trouble with my j tube and the Dr told me the same thing to keep rotating it.. my gastroparesis is not letting me eat nothing not even feeds.. plus the diabetes has my bs on the low side blood pressure also low and my anemia goes from 10 to 7. I'm having my appt w my pain management Dr next week for another session of steroid shots and epydural... glad ur doing so much better.. we will both make it thru this and the pain..
Praying that you know that to do. One of my best friends lost his family, job, wife and kids due to narcotic addiction. It is so hard when there aren't good options.
Butrans patches have worked really well for me and it is one of the few opioids that doesn't cause tons of degranulation. Voltarin gel helps me with some of the joint pain. I use Emla cream(sometimes I do fine with it and others it bothers me) to help desensitize some of the pain from my RSD. Domperidone majorly helped with the abdominal cramping and nausea before I ended up with intestinal failure. A spinal cord simulator and botox injections used to help with the pain and muscle spasms in my arm and neck with RSD. I started with severe gastroparesis and now have complete intestinal failure. All from my lovely MCAS ❤️(
I hope you can find some good solutions for your pain, and the methocarbamol and cbd oil work without negative side effects. As a fellow chronic pain warrior I understand how it is to struggle just getting through the day. My doctor prescribed Flexeril, it works but now that I'm at the maximum dose I have to go to pain management. Not fun, but far better than the alternative. I'll be praying you have days with less pain.
I'm so sorry your having so many problems right now. I absolutely love the way you always have a positive attitude! Methocarbonol is the only muscle relaxer that has ever worked for me. I hope it works for you! Good luck!
Jaquie, I have had symptoms since the early 90's but no doctor ever put my symptoms and a diagnosis other than fibromyalgia together. I know you have insurance, but this seems so expensive. I wonder how you manage to afford it. I know I dread any testing the doctors ask of me because of deductibles and co-pays. I want to thank you for educating us.
So glad that the stretching is fixable!!
I also have a question about Harlow. How long do you usually leave her vest on at a time? You mentioned it was kind of a long drive, so was there certain a reason you decided to leave it on her?
My pup loves working but only barely tolerates her vests.
Doctors who work around issues is helpful. My GI approved IV keppra for me since I was recently diagnosed with epilepsy. I take it orally right now or via my J tube but if I can't keep it down or absorb it we need a way for me to get it so having some on hand will help. I'd rather not rely on IV only meds but since I am on IV zofan and IV benadryl adding this one when needed will improve my abilty to control the epilepsy. If I have seizures I can't drive, if I can't drive I can't work (ER vet with some oncall shifts as well). Doctors who listen and work around things is fantastic.
Gentle hugs. I wish I could give you the gift of being pain free.
You are amazing jaquie thank you for posting on here and raising awareness for Gastroparesis love you girl❤️
Sending you good vibes, healing, and pain relieving superpowers!
So onto something else to ponder on with your other doctors, are you able to have antidepressants and take your regular required medication? (Antidepressants and anxiolytic/antianxiety medications, for example Cymbalta/Duloxetine and others such as Amitriptyline etc have been used to manage pain even if the person does not show symptoms of a mood disorder etc).
I was also wondering if you and your doctor (preferably doctorSSSS plural!) could make a really strong case for massage therapy to be more of a regular thing (I was thinking once a fortnight or on the week of the month you aren't doing your ketamine injections, IVIG, other specific appointments, plus prep a few days beforehand!) and covered by insurance. I have a long list of reasons why this is the better (or as far as insurance is concerned, cheaper) option than certain pain medications unless during a procedure, planned intervention/treatment, or if needed during an ER visit. You seem to definitely seem more relaxed, calm, and more able to actually breathe after you have a massage session (or at least you do in the vlogs that I've seen!). Massage also doesn't seem to cause too many interactions as far as medications, treatments, or symptoms/conditions are concerned. You have a better quality of life, infact I think that's an actual quote from you! I can think that the massage will not only help the lymph system to release, process, and remove toxins from the body, it boosts your circulation so that your IV fluids can access and enter the body's tissues and cells as needed on a much more efficient basis than before, so your motility might improve as a secondary add on. It has been proven in studies to improve the sleep of participants in both insomniacs and those with normal sleeping habits (the sleep has also been proven to be a deeper sleep than their normal sleep, and in the healing/resting type!). For those who can tolerate the contact part of it it has been proven to calm those with severe autism and carers/medical staff (some whom have minimal or no knowledge of the 'massage study' being done) have reported that those who struggle with touch sensations can tolerate it significantly better and/or for longer than previously. Since touch triggers what I call 'happy hormones', it will help guard you against mood disorders (such as depression and the horrifying life annihilating evil that follows them) that can come to those with chronic conditions and/or pain conditions. The 'happy hormones' are also able to reduce the blood level of stress hormones, and I think they also do that with the system that causes allergic reactions as well as improving 'healthy' immune response (and some studies show it even can assist those with autoimmune disorders to be less symptomatic!!). Also, if you are able to tolerate it, having a back massage (from about the breastbone down to almost the back passage -it feels weird to have someone around there but just focus on how the massage feels until it doesn't feel too weird any more, especially if you set boundaries beforehand!) seems to help my body move things to a place where I can visit the toilet, but used to help me with motility. I have also heard that an abdominal massage boosts motility as well as helps to ease nausea, bloating, indigestion, cramping/spasming, tenderness, trapped air and flatulence amongst other things! With the abdominal massage, some people swear that doing it in a certain direction is better than the other, some say both directions one after the other is better, and some say it's a massage who cares(!). I've not had personal experience due to it being too sensitive and/or painful to try, and I've not seen any credible studies with a decent sample size to say what is better. Although you can search youtube for videos on it, and most of the abdominal massages are kind of only moving the skin itself, and tends to focus in a ring around the belly button, a bit like if a tubie pad was scaled up (as if the belly button was the stoma site!). That's probably only a fraction of potential other reasons!
Also, as offered before, if you'd like to have a vent (a chat one, not a gastro one! Teehee!) about things in order to limit your frustrations and what I call 'inner head arguments with yourself' (where it seems like you are arguing various points with one or more other versions of you, and tends to be either a back and forth argument or a circular one with no resolution or solution found), then the offer to do so is still there. Let me know if you wish to take it up. As an additional aspect, I do have the experience of chronic pain, and take a variety of pain medications through a variety of means (for example I take tablets, have transdermoplasters, use external gels and other things), as well as doing things to try and target a problem at the source.
Finally (and for all those whom have read this far!!), I have my first appointment at a pain clinic in March (they sent me a book sized form to fill out! Grr!), and I'm kinda having a 'it's a new thing, so start panicing and being in a borderline random condition flare up to the point I will either miss the appointment, or the flare will end about 1 min before either my taxi arrives or my appointment starts!
I praying everything goes well for you! You are such an awesome person!
I am so sorry you are battling pain. I know all too well how that goes! It's so hard, and with added medications, it's so hard to remember what I can take and when I can take it and if I can take it with something I've already taken! ARGH!! My Pharmacy now thinks I'm trying to get extra meds (which I'm not!!!) because I asked them to fill a muscle relaxer, and they already had filled it. I picked up the medication, but thought it was something else, especially since they changed manufacturers of the medication and I now have 3 medications that look almost identical! Now they won't fill two on my medications until Saturday. Fortunately, I have enough to get through, I just hate that they think that about me. I'll have to get past it. My Pain Management appointment is not until the 20th of this month!! I hope they can do something for me to get me off of some of these medications!
Hey Jaquie, I don't know if this is too personal, but I noticed you're not wearing your alert button in the past couple videos (but I might also be oblivious). Did you get your system worked out or are you going to go a different route? Also, would you recommend the system to others who need an emergency line?
Hope things get a little better for you soon! I start injections this week for pain and am a little nervous but seeing how strong you are has helped comfort me. Normally I wouldn't recommend anything medical because I know how frustrating that can be when you've tried everything but sometimes for car rides I use a HappyWrap (happywrapstore.com) which is a neck wrap filled with flax seed that you can microwave for an on the go heating pad. Just something that helps for me, thought I could tell you about it. I hope you feel better soon!
CBD can honestly do wonders for pain, sense you are highly sensitive to many things take your time and do a little research, you can get creams and lotions and pain rubs ect. But you will want to watch what is in each one as you are sensitive to many things, I had a slipped disk in my neck, I was on muscle relaxer, and steroids, and a high does ibuprofen and it didn't help, my friend gave me a CBD menthol rub and it was truly amazing!
I take methocarbamol three times a day. It helps. Baclofen never worked for me. I'm always looking for the right answer to pain management. I mean it when I say I truly feel your pain. Hugs!
Tammy Rowe-Wallace I take it to.
I personally use cbd on a regular basis for both pain and nausea/appetite issues from cf and it has helped me so much..I've had a g tube placed and I believe the oil was one reason I healed like I did because the pain and discomfort from it went away so much quicker with it than before I took it..they also make cbd ointments and rubs that you can apply externally for muscle and joint pain as well as burns or minor healing wounds as well which again helps me
Hay, I use CBD for my Lupus, and it helps! I use Koi CBD, its all natural, and vary limited ingredients! and I got a joyetech AIO to inhale it. It has done wonders, it also smells good, and doesn't taste like much, but if you don't want to inhale it, they also have gummies.
I am so sorry your going through that. I have EDS and Gastroparisis too. My surgeon at UCLA actually took my stomach out instead of doing a tube. I am definitely not recommending that. I understand your suffering. Everything you have said I have tried. Pain killers, CBD and Bachlofen. Bachlofen actually helps me some so I am sorry it didn’t work for you.
My mother had fibromyalgia and chronic ehlers danlos type subluxes from Mercury poisoning and from medication side effects. I hope your pain isn't caused or aggravated by any of the meds you have to take and that you don't have any heavy metal poisoning. Medication side effects often include pain and dental amalgams are poison.
I've tried many muscle relaxers and had either bad reactions or they did nothing. The only one that has ever worked for me was Methocarbamol so hopefully it will work well for you too!!
I've been considering CBD as well. I'm worried about the side effects and it's also extremely expensive to get a kind with no THC from a reputable dispensary.
My rheumatologist wants to have me try a compounded pain cream. The problem I have is, I can't use it while taking my opioid based pain meds, which I have for Chiari Malformation that hasn't been decompressed yet. (I still have to wait for my disability hearing before I can get into a neurosurgeon.) You might ask about compounded pain creams. Also, Christina Dougherty has a awesome link and discount code for a great cbd cream.
HUGS TO YOU AND TO HARLOW!
I’ve been hoping to hear you would be prepared to try CBD as I’ve heard so many wonderful stories of how it has helped people with pain management. You are a lovely girl and it makes me sad to see you hurting so much; Please god you will get some relief from your pain soon. Sending hugs from Dublin, Southern Ireland 🇮🇪☘️.
I use both CBD and THC and they have been extremely effective at controlling my pain and now that I've had the optiin it makes me so frustrated that its always a last resort when it works better and has fewer side effect than regular pain medications
Oh that pup is so darn cute! I'm very interested to see how you get on with CBD oil. I'm on the brink of trying it but it's not something Drs really acknowledge in the UK. Glad you've got a plan for your stoma so it heals well :)
By the way, we are being prescribed neurological meds. Namely gabapentin or pregabelin.your pain consultant should be concentrating on enabling you with pain control. Non orals include morphine and fentanyl skin patches.
Big hugs from me and Dollar (my new service dog)🌈❤️🐶🐕
Cajsa Mörk aww I like dog especially service dogs (are you from Sweden?)
I’m so glad your J-Tube can be fixed!
Well I’m exactly like you with pain I have MS and I started buying hemp sold as hemp tea. Full of CBD I vape it it’s by far out of all medication given works the best. It’s not illegal in many states it’s not here in the UK. CBD oils get a vape pen. I’m never ever high it works amazing.
I used CBD oil for a while as an anticonvulsant. I started out eating CBD lollipops but they became less and less effective over a period of about a month. After that I switched to putting oil under my tongue. It worked really well the first couple of times but then I had a terrible reaction to it. It made my symptoms severely worse. I know we are different people with very different medical problems but I thought my experience was worth noting.
I keep dislocating my jaw in my sleep. I can't get the pain or joint in control. Hopefully they can get you sorted out
You are so strong! Maybe you could use Wag to help walk Harlow when you're not feeling too well? Just a thought :) just keep swimming!
Foe painrelief from cbd you also need a small amount of thc! But im in the stage of trying it
I Mentioned that a few weeks ago to you!! I give my Dog CBD for his pain and amazing so many ppl take this and it does wonders.
I was on Robaxin (methocarbomal) for my fibromyalgia, it did definitely help. I only stopped taking it because it gave me a rash and aggravated my vertigo. I hope it helps you! I take cbd for my chronic pain now too, Charlottes web strain. It's really does seem to help.
Hope you fell better soon 👍 A dog is a Best freind 👌🏻 i pray for you every Night 🙏🏻 Big hug from Josefine from Denmark
Hang in there god is with you . And we are too. You keep on frightening.
Keep your head up and remember tomorrow is a new day! Hope tomorrow is a better day.
You may have heard of that drug under the trade name Robaxacet. I take it for my back pain along with nerve blocks. Also on baclofen and tizanidine for my muscle spasms from a rare spinal cord disorder. Im on lyrica for nerve pain as well. I’m on narcotic pain meds too, it was a hard decision to take as I have GP and am tube fed too, but nothing was working. I still have some pain, as nothing is fool proof. Good luck, I hope the new med helps! You need relief, I know how hard it is to be in pain 24/7.
Can I ask what it feels like when your legs give out? I occasionally have falls and I think I get a sort of numbness for a moment near the skin but I'm not sure if it's from the EDS or some kind of anxiety response
I was concerned about the CBD but I found it was the best for me. I hope it works for you
Hoping all the doctors tips help you!! Hippo is such a cute puppy in the last clip (as always). 😍
Sending good vibes your way. I can't tolerate narcotic pain meds due to my stomach. I deal with pain, but it's manageable. Vick's Vapor Rub helps me, but I know you're pain is worse than mine.
CBD topicals have gotten me through many pain panic moments. I also use CBD mints for longer periods of pain. Please note though that they are not all equal. I tried 5 different topicals before settling on three I love. I hope you have as much luck with them as I have. You need to give your body a break .