I hope you guys don't mind that I kept this mostly unedited. Here's that oil I mentioned: www.amazon.com/gp/product/B001... Instagram: mrs_paprika Snapchat: mrspaprika Tumblr: mrs-paprika
I get the "I'm not trying hard enough" comments from my co-workers so often it sucks so badly The pain and fatigue are just too much sometimes. Sending you good vibes my fellow fibro/sjogrens sufferer
I have just been diagnosed with sjogrins and have fibromyalgia as well. I get where you are coming from. Because I don’t look sick people think it’s in my head. At the moment fatigue is ruling my life. I find you very incouraging. ❤
I feel your pain. Everyone on TH-cam has “their cure”. Weather it’s going vegan,Keto,meditation, essential oils,cbd, etc. which is great but they often are not tolerant or open minded in regards to others beliefs,experiences and feelings. Be strong. And best of luck on ur journey. 😘
I fully relate to your thoughts. I am tired of all the "I have to fix myself before I can get better. " I have been on this crazy train trip for nearing 40 years. I just keep praying and refusing to give up.
Sjogrens & fibro sister -THANK YOU for your honesty. I'm with you struggling with these diseases as well as 2 other autoimmune diseases. I still work full time but I don't know how I do it.
Thank you So much for the honest approach to these 2 “invisible” diseases. Yes I have both of them and am just now recovering from COVID. Of course the doctors have told me that with the 2 autoimmune diseases it is taking much longer to recover. I’m also a cancer survivor so at my age, 85, my health isn’t the best. Keep hanging on and I shall do the same. We just need to try to stay positive.
I feel/have felt the exact way you do ! It's so hard to be alone in it and explain to other people. I would have never understood it myself before I actually had it. Wish you all GOOD days!
I’m 60 years old and was diagnosed with Lupus during my first pregnancy. Over the years I’ve added, fibromyalgia, arthritis,and today ( or this past month) with Sjögren’s syndrome……. So now I’m wondering what else can I add to my list. Thank you for your video. I understand what you mean about “advice “ . I have taken the drugs you talked about, but felt that they did more harm for me. I’m glad you can take them. I pray you have better days in the future.
Thank you so much for saying what I feel all the time. People either ignore the fact that I have this painful life or they come up with all these comments.
I have had fibromyalgia for 5 years and I have been told everything in the book, like "oh it's all in your head" , and " if you lose weight it will get better and it will go away" and I wish people could see this video and understand. It has helped me know that I am not alone
Mrs_Paprika Thank you for bringing up the many things you touched in this video. I've experienced a lot of what you spoke about here. I can relate. It's tiring to have everyone tell you what you should or shouldn't take. Fresh air, acai berries, eye-of-newt, tongue of dog, & blowing smoke by thinking everyone of us would be doing so much better if we sat in a circle thinking happy thoughts while holding hands & singing kumbaya... that's not going to make it easier or cure these diseases. And, as someone who grew up around herbal medicine, that's not going to happen either since the one herb that will help is kept illegal & in the few places where it is legal, it's not affordable for those who need it most. I still use ginger root to help with sour stomach. It works great sugared & chewed when it's able to be tolerated during nausea spells. Lavender does great promoting sleep but not for those of us living with chronic insomnia... It won't work when our pain levels are thru the roof either. It infuriates me too. I'm especially angry at the govt for forcing doctors to throw us into the category as 'junkies' when nothing could be further from the truth. My doctor is on the verge of stopping what little pain medicine I take now & it's nowhere near what my medicine regimen was when we finally got it right where it controlled most of pain. I was so much more active then, but it was because I didn't hurt all the time without end. After my meds were cut in half, so was my mobility. Since I have a retinal disease with optic nerve defect (the latter since birth & believed to be caused by my being so premature & the fact my birth mother had injections of a drug to stop labor & the drug's side effect caused it to be discontinued for use & banned for pregnant woman b/c it could cause blindness - my birth mother's records were conveniently lost -even to her for that time period). I can't take Plaquenil for this reason though I did take it for a number of years though it didn't appear to be helping in any way. As for psychotherapy, I hear you there. I spent the better part of my late teens & early 20s seeing a psychologist to help me deal with PTSD, anxiety disorder w/panic attacks, & mild depression. In addition, I attended a lot of ALCOA meetings & the connection with other adult children of alcoholics & the many parents who were enablers to the abusers did help. Most, like me, were seriously abused & beaten but we do carry on & deal with life as it comes. I hate that I still have to see a psychologist just to get my anxiety med filled. I've had to fight that jerk every step of the way to get my diazepam filled. My former doctors all agreed that there was no reason to fix what wasn't broken. I never abused this medicine & I've taken it since I was about 11yrs old. In fact, one of the guinea pig meds I was given to 'just trust me, humor me bc it will work' by one of these doctors who thought it was okay to keep throwing my life out of whack with meds that only made things worse... prescribed a depression medicine that actually made me homicidal. I sent my DH & kids away until I was sure the medicine wasn't in my system anymore. That was when my reg doc stopped trying to find new drugs to "fix" the problem despite having the doctor who had treated me & more than 5 generations of my family (as well as DH's family, tho this doctor made house-calls for my grams, 3 great-aunts, & a great-uncle along w/my great-grandfather) & had sold his practice to this young doctor, had told him & gave him notes on each patient before he sold his practice. It took about a year before he say the wisdom in this 100-year-old doctor. (PS: the elderly doctor I'd seen for so many years, he knew what my retinal disease was without my having to explain it. In fact, he even told me, w/the patient's permission, that I wasn't alone; my MIL's former next-door neighbor had lived w/it for more than 70yrs. I saw a local ophthalmologist who for more than 3yrs couldn't figure out what was causing me to need stronger glasses & contacts, tho I didn't wear the contacts frequently b/c of 'dry eyes'. He even refused to refer me to a specialist to help figure it out. I had to roughshod over him & thru the help of a nurse to get an appt & have my insurance pay it. I went into the bldg at 7am & by 4pm, I had endured countless test & even photos taken while an iodine dye was shot thru my veins. They knew what I had, that I was already legally blind, & they suspected the optic nerve damage, albeit it was stunted growth vs damage per se. I was also told that when my glasses no longer worked to lay them down b/c I'd never hold a script long enough to warrant the cost. They were right. And, no there is no cure for the retinal disease or the optic nerve defect) I'll be checking your other videos when I can. So sorry about the loss of your son.
Just found you. Had my first visit to a rheumatologist this morning. She knows a lot about fibromyalgia. We’re trying to figure out if I have sjogrens along with fibromyalgia. The fatigue, depression and guilt are the worst. I feel like I’m being lazy or my family thinks I’m making this up. I’m hoping to learn more ways of coping with the symptoms. I think the fact you can put out videos and do all the other things for yourself is awesome! You should be proud of yourself 😻🙏🏻
I thank you so much for putting this video out. It is definitely SO right on target with every single thing you discussed. If only I had someone who would listen, I would for sure share this video with them. This is what they need to see. However, they just don't appear to want to listen. They have their own judgments already set in place, sadly. I look forward to seeing more of your videos. You seem to know how to describe this condition so perfectly.
Amen to this! I’m a longtime Fibro sufferer and now seem to be adding reynauds and Sjogrens to the list. I often wonder if the people who claim to go into remission because of a diet or a supplement are just in a quiet phase of their disease. I’m pretty much in permanent flare now and could see how at various points I might have thought I was all better.
God bless you and thank you for this video. I was diagnosed with Sjogrene's Syndrom in March 2019 by a rheumy, who also thought maybe I have Fibromyalgia..
you can have both Sjogren's and fibromyalgia. I do. Although since I quit eating processed foods but especially high fructose corn syrup I do not have the sore trigger points for sore muscles.when my children were young they thought it was funny when they poked me that I would scream. But I was eating a lot of junk food and drinking Pepsi. All filled with high fructose corn syrup and since I quit that I don't have the muscle soreness like I did before. But my biggest problem is fatigue!! If anyone has advice to combat the fatigue, I would greatly appreciate it. I try to eat very well, take supplements, with yoga and stretching twice a day to help prevent some of the stiffness from the arthritis. The gluten-free diet doesn't help the Sjogren's but it helps the fibromyalgia some but I think that's because the toxins attack the nervous system causing the fibromyalgia.
The medication that really turned things around for me was meloxicam which is a once a day anti-inflammatory. The OTC are basically ineffective because it's hard to keep the levels consistent with them. For me, both Plaquinel and Gabapentin made me somewhat better but not like the meloxicam did. I went to my primary and she had not heard there were once-a-day NSAIDS and just prescribed the first one on my list. Meloxicam 7.5 is better on the stomach and affects blood platelets much less than other NSAIDs. Thanks for your video!
Hello dear, I am Brazilian and here...IS THE SAME!! I am really tired (lol) to explain my "problem" , because sounds that "everybody has the same". Dry eyes?? Everybody has. Dry mouth?? Everybody has! O discover that everybody has the same issues and THE CURE!!!! Big hugs from my Brazilian heart for your heart!!
The fibro or pain , you need to have a monthly Swedish massage or Thai massage and stretching to get rid of pain and it really helps a lot and more on fruits and green smoothies to get rid of inflammation and stop carbs and sweets . God bless to all !
+Annabelle Lee It's not letting me reply to you directly for some reason, arg! Thank you so so much, for your comment and for sharing. And I'm so sorry about your job, that's so frustrating and defeating. It's hard to find a sense of normality when we can't live "normal" lives. And it certainly isn't easy to find a balance with stress, especially when people require repeated explanations. I haven''t heard of using flax seed oil, I'll definitely look into that!
+Annabelle Lee I didn't have much success with the punctal plugs, and I actually had to have one removed because it hurt too much. At the moment I'm trying out gelatin supplements (supposedly good for joints and whatnot) so once I've given that a go I'll try the flax seed oil. Woah Ireland! I love how the internet lets us connect with people all over the world:)
I deal with this type of thing with my mental illness and my youtube channel, and just everyday life in general. It's so hard to explain the true struggle of a sepcific disease/disorder to someone that doesn't deal with your issue. And even those that do, not everyone reacts the same way to specific treatments. Things are said with good intentions, but just end up causing more damage in the end. It's very frustrating, so I understand to a certain extent where you're coming from here. Hopefully people will be more understanding after watching this.
+dxgirly Yes! People often forget that everyone experiences these illnesses differently, and what one struggles with or has success with can change from person to person. Thank you so much for your comment!
I am so glad to hear you i have the same thing and I feel no one understands, I don't know anyone else personally with same issues, I am 53 years old had sjogrens since 2000 i was fine, then tyroyd issue, then Ra , then osteoporosis, i was diagnose with fibromyalgia about 3 years ago that is when everything went down hill, I try everything but no luck, last September I had horrible tension headaches that send me to hospital I was off from work for 3 weeks went back to work and it was miserable i finally out on disability since July 11 and it has been very hard I have more bad days than good, i have so much prescriptions that my fear is to become a drug addict, but the pain is so intense its hard no to take medicine. My legs hurt so much, now my RA is acting up, not to mention i have uti most of times, las week i had horrible pain on my check by my ear because my saliva gland was swallowed, tired all the time, I am going to star Lyrica hope that makes me feel better, I take 3 different meds for pain, but I am feeling worst I have anxiety and more depressed Its hard I feel no one understands they think its all in my mind even my mother she is 82 and makes remarks that she feels better than me, and yes all the people telling me what to eat or drink or exercise they do not understand
I'm so sorry its been so hard for you! I definitely have a more mild form that I've managed to adapt to. I hope the Lyrica works out for you! I believe you should take as many drugs as your body needs, even if it seems like a lot or you become dependent on them, your wellbeing is more important, don't let anyone make you feel bad for needing them.
Hi! Good video! I´m sorry you lost your son - that's traumatic. An old Swedish study showed that in a testgroup of arthritics 100 % of the women had gone through some kind of trauma within a year from when they got their autoimmune desease. This is true also for me, it seems to be a general truth. But you can't delete trauma. The accident has already happened and the body has reacted. It's like loosing a leg. You can't get it back, but you can learn to live without it. I have RA and Sjögren's syndrome + some more stuff. I have also been judged by people a lot, but they are so ignorent so let us just leave it and do our best, as you are. God bless!
i always thought auto immune disease are very probably often triggered by trauma/high stress...would love to find that research. Best of luck with everything :)
none of that stuff worked for me either. i went to the pain clinic, what a joke. dr. told me He knows about fibromyalgia. go to water therapy. I could barely make it to appt. with him. I started getting this in 97. if he doesn't have it then he does not know. I tell them I do not have a life and need something to help me be able to walk a couple days a week. get dismissed. thankyou for sharing what you do.
Thanks You did a great 👍 👌 👏 video about expressing the situations you have been experiencing. Please share next updates, how are you doing . Connections are Needed either it's whatsapp or any other for sharing better solutions. I have been experiencing severe Dry eyes for more than 18 years. I haven't found good solutions for eyes. Hoping if this one eye condition had a solution it would have been super wherein other symptoms could be manageable.
I was diagnosed with chronic fatigue syndrome and fibromyalgia caused by covid 19 however since the end of the last month i woke up one morning and have felt a hell of a lot better since then i wonder if im just getting a weeks or a month of not much symptoms is that possible?
I hear ya! I got all the time maybe you will feel better if you lose weight. Drives me crazy! On too of everything I had thyroid cancer and my thyroid was removed. I am good now though. I know people are trying to help but, they arent really helping us. Hang on there! Fingers crossed for cures for us!
I had fibromyalgia for at least 10 years before the classic Sjogren's (dry eye and dry mouth, fatigue) showed up. Plaquenil helped me a tremendous amount! I strongly suggest plaqueil. I also use Restasis and Xiidra eye drops. Finally, check into EyeEco eye covers for nighttime sleeping. The Plaquenil helped with fibro, dry mouth and the systemic issues, especially the fatigue. Homoeopathic does NOT work, I tried many.
I want the advice. I'll take all the advice I can get but then again I am 60 and although I've had Sjogren's since I was a teenager although undiagnosed I have treated each symptom separately. But I recently started low dose naltrexone to see if I can treat the whole thing. My biggest problem that I haven't been able to overcome is vaginal dryness which is worse for me because I have already been menopause. Gabapentin or neurontin made me neurotic and Lyrica made my eyesight worse. I do want to ask a question about the plaquenil. I have read where the plaquenil will help give you energy along with the low dose naltrexone. Do you think the plaquenil helps with your fatigue?
hi paprika I hope your having a good day. I've been diagnosed with benign fasiculation syndrome and sjogrens. can I ask you how you cope I'm a 44 year old male from Manchester England. God bless
John Brooks have you tried low dose naltrexone yet? I am only on my second week but I am feeling less joint pain. I know your comment was two years ago but I wanted to see if you're doing better.
I get what you mean today I was given some awesome advice overall but then was told that there is no way I can have both fibro and sjogrens at the same time. I'm like WHAT!! Thank God **sarcasm**
hello ! just wanted to point out the poor quality sound of your video, pity :/ i made sure sound on my pc is at its maximum but i can barely hear (not using earphones/headset)
Hello fellow sjoggie. People just don't understand this invisible illness we have. Hang in there and good luck to you
I get the "I'm not trying hard enough" comments from my co-workers so often it sucks so badly
The pain and fatigue are just too much sometimes. Sending you good vibes my fellow fibro/sjogrens sufferer
🙏
I have just been diagnosed with sjogrins and have fibromyalgia as well. I get where you are coming from. Because I don’t look sick people think it’s in my head. At the moment fatigue is ruling my life. I find you very incouraging. ❤
I feel your pain. Everyone on TH-cam has “their cure”. Weather it’s going vegan,Keto,meditation, essential oils,cbd, etc. which is great but they often are not tolerant or open minded in regards to others beliefs,experiences and feelings. Be strong. And best of luck on ur journey. 😘
I fully relate to your thoughts. I am tired of all the "I have to fix myself before I can get better. " I have been on this crazy train trip for nearing 40 years. I just keep praying and refusing to give up.
Sjogrens & fibro sister -THANK YOU for your honesty. I'm with you struggling with these diseases as well as 2 other autoimmune diseases. I still work full time but I don't know how I do it.
Thank you So much for the honest approach to these 2 “invisible” diseases. Yes I have both of them and am just now recovering from COVID. Of course the doctors have told me that with the 2 autoimmune diseases it is taking much longer to recover. I’m also a cancer survivor so at my age, 85, my health isn’t the best. Keep hanging on and I shall do the same. We just need to try to stay positive.
I just saw this. I have had both illnesses for years and I can so relate this more than you know. Thank you for doing this video.
I feel/have felt the exact way you do ! It's so hard to be alone in it and explain to other people. I would have never understood it myself before I actually had it. Wish you all GOOD days!
I’m 60 years old and was diagnosed with Lupus during my first pregnancy. Over the years I’ve added, fibromyalgia, arthritis,and today ( or this past month) with Sjögren’s syndrome……. So now I’m wondering what else can I add to my list. Thank you for your video. I understand what you mean about “advice “ . I have taken the drugs you talked about, but felt that they did more harm for me. I’m glad you can take them. I pray you have better days in the future.
Thank you so much for saying what I feel all the time. People either ignore the fact that I have this painful life or they come up with all these comments.
I have had fibromyalgia for 5 years and I have been told everything in the book, like "oh it's all in your head" , and " if you lose weight it will get better and it will go away" and I wish people could see this video and understand. It has helped me know that I am not alone
Mrs_Paprika Thank you for bringing up the many things you touched in this video. I've experienced a lot of what you spoke about here. I can relate. It's tiring to have everyone tell you what you should or shouldn't take. Fresh air, acai berries, eye-of-newt, tongue of dog, & blowing smoke by thinking everyone of us would be doing so much better if we sat in a circle thinking happy thoughts while holding hands & singing kumbaya... that's not going to make it easier or cure these diseases. And, as someone who grew up around herbal medicine, that's not going to happen either since the one herb that will help is kept illegal & in the few places where it is legal, it's not affordable for those who need it most. I still use ginger root to help with sour stomach. It works great sugared & chewed when it's able to be tolerated during nausea spells. Lavender does great promoting sleep but not for those of us living with chronic insomnia... It won't work when our pain levels are thru the roof either. It infuriates me too.
I'm especially angry at the govt for forcing doctors to throw us into the category as 'junkies' when nothing could be further from the truth. My doctor is on the verge of stopping what little pain medicine I take now & it's nowhere near what my medicine regimen was when we finally got it right where it controlled most of pain. I was so much more active then, but it was because I didn't hurt all the time without end. After my meds were cut in half, so was my mobility. Since I have a retinal disease with optic nerve defect (the latter since birth & believed to be caused by my being so premature & the fact my birth mother had injections of a drug to stop labor & the drug's side effect caused it to be discontinued for use & banned for pregnant woman b/c it could cause blindness - my birth mother's records were conveniently lost -even to her for that time period). I can't take Plaquenil for this reason though I did take it for a number of years though it didn't appear to be helping in any way.
As for psychotherapy, I hear you there. I spent the better part of my late teens & early 20s seeing a psychologist to help me deal with PTSD, anxiety disorder w/panic attacks, & mild depression. In addition, I attended a lot of ALCOA meetings & the connection with other adult children of alcoholics & the many parents who were enablers to the abusers did help. Most, like me, were seriously abused & beaten but we do carry on & deal with life as it comes. I hate that I still have to see a psychologist just to get my anxiety med filled. I've had to fight that jerk every step of the way to get my diazepam filled. My former doctors all agreed that there was no reason to fix what wasn't broken. I never abused this medicine & I've taken it since I was about 11yrs old. In fact, one of the guinea pig meds I was given to 'just trust me, humor me bc it will work' by one of these doctors who thought it was okay to keep throwing my life out of whack with meds that only made things worse... prescribed a depression medicine that actually made me homicidal. I sent my DH & kids away until I was sure the medicine wasn't in my system anymore. That was when my reg doc stopped trying to find new drugs to "fix" the problem despite having the doctor who had treated me & more than 5 generations of my family (as well as DH's family, tho this doctor made house-calls for my grams, 3 great-aunts, & a great-uncle along w/my great-grandfather) & had sold his practice to this young doctor, had told him & gave him notes on each patient before he sold his practice. It took about a year before he say the wisdom in this 100-year-old doctor.
(PS: the elderly doctor I'd seen for so many years, he knew what my retinal disease was without my having to explain it. In fact, he even told me, w/the patient's permission, that I wasn't alone; my MIL's former next-door neighbor had lived w/it for more than 70yrs. I saw a local ophthalmologist who for more than 3yrs couldn't figure out what was causing me to need stronger glasses & contacts, tho I didn't wear the contacts frequently b/c of 'dry eyes'. He even refused to refer me to a specialist to help figure it out. I had to roughshod over him & thru the help of a nurse to get an appt & have my insurance pay it. I went into the bldg at 7am & by 4pm, I had endured countless test & even photos taken while an iodine dye was shot thru my veins. They knew what I had, that I was already legally blind, & they suspected the optic nerve damage, albeit it was stunted growth vs damage per se. I was also told that when my glasses no longer worked to lay them down b/c I'd never hold a script long enough to warrant the cost. They were right. And, no there is no cure for the retinal disease or the optic nerve defect)
I'll be checking your other videos when I can. So sorry about the loss of your son.
Just found you. Had my first visit to a rheumatologist this morning. She knows a lot about fibromyalgia. We’re trying to figure out if I have sjogrens along with fibromyalgia. The fatigue, depression and guilt are the worst. I feel like I’m being lazy or my family thinks I’m making this up. I’m hoping to learn more ways of coping with the symptoms. I think the fact you can put out videos and do all the other things for yourself is awesome! You should be proud of yourself 😻🙏🏻
I thank you so much for putting this video out. It is definitely SO right on target with every single thing you discussed. If only I had someone who would listen, I would for sure share this video with them. This is what they need to see. However, they just don't appear to want to listen. They have their own judgments already set in place, sadly. I look forward to seeing more of your videos. You seem to know how to describe this condition so perfectly.
Thank you for sharing your experience and first hand knowledge.
Amen to this! I’m a longtime Fibro sufferer and now seem to be adding reynauds and Sjogrens to the list. I often wonder if the people who claim to go into remission because of a diet or a supplement are just in a quiet phase of their disease. I’m pretty much in permanent flare now and could see how at various points I might have thought I was all better.
God bless you and thank you for this video. I was diagnosed with Sjogrene's Syndrom in March 2019 by a rheumy, who also thought maybe I have Fibromyalgia..
you can have both Sjogren's and fibromyalgia. I do. Although since I quit eating processed foods but especially high fructose corn syrup I do not have the sore trigger points for sore muscles.when my children were young they thought it was funny when they poked me that I would scream. But I was eating a lot of junk food and drinking Pepsi. All filled with high fructose corn syrup and since I quit that I don't have the muscle soreness like I did before. But my biggest problem is fatigue!! If anyone has advice to combat the fatigue, I would greatly appreciate it. I try to eat very well, take supplements, with yoga and stretching twice a day to help prevent some of the stiffness from the arthritis. The gluten-free diet doesn't help the Sjogren's but it helps the fibromyalgia some but I think that's because the toxins attack the nervous system causing the fibromyalgia.
Agree that a Chiro helps, as does daily walking. Just don't over-do it.
The medication that really turned things around for me was meloxicam which is a once a day anti-inflammatory. The OTC are basically ineffective because it's hard to keep the levels consistent with them. For me, both Plaquinel and Gabapentin made me somewhat better but not like the meloxicam did. I went to my primary and she had not heard there were once-a-day NSAIDS and just prescribed the first one on my list. Meloxicam 7.5 is better on the stomach and affects blood platelets much less than other NSAIDs. Thanks for your video!
Hello dear, I am Brazilian and here...IS THE SAME!! I am really tired (lol) to explain my "problem" , because sounds that "everybody has the same". Dry eyes?? Everybody has. Dry mouth?? Everybody has!
O discover that everybody has the same issues and THE CURE!!!!
Big hugs from my Brazilian heart for your heart!!
Thank you for doing this video.
The fibro or pain , you need to have a monthly Swedish massage or Thai massage and stretching to get rid of pain and it really helps a lot and more on fruits and green smoothies to get rid of inflammation and stop carbs and sweets . God bless to all !
+Annabelle Lee It's not letting me reply to you directly for some reason, arg!
Thank you so so much, for your comment and for sharing. And I'm so sorry about your job, that's so frustrating and defeating. It's hard to find a sense of normality when we can't live "normal" lives. And it certainly isn't easy to find a balance with stress, especially when people require repeated explanations. I haven''t heard of using flax seed oil, I'll definitely look into that!
+Annabelle Lee I didn't have much success with the punctal plugs, and I actually had to have one removed because it hurt too much. At the moment I'm trying out gelatin supplements (supposedly good for joints and whatnot) so once I've given that a go I'll try the flax seed oil. Woah Ireland! I love how the internet lets us connect with people all over the world:)
I also have Sjogrens and Fibromyalgia and Hashimotoes autoimmune thyroid disease. No fun.
I deal with this type of thing with my mental illness and my youtube channel, and just everyday life in general. It's so hard to explain the true struggle of a sepcific disease/disorder to someone that doesn't deal with your issue. And even those that do, not everyone reacts the same way to specific treatments. Things are said with good intentions, but just end up causing more damage in the end. It's very frustrating, so I understand to a certain extent where you're coming from here. Hopefully people will be more understanding after watching this.
+dxgirly Yes! People often forget that everyone experiences these illnesses differently, and what one struggles with or has success with can change from person to person. Thank you so much for your comment!
I am so glad to hear you i have the same thing and I feel no one understands, I don't know anyone else personally with same issues, I am 53 years old had sjogrens since 2000 i was fine, then tyroyd issue, then Ra , then osteoporosis, i was diagnose with fibromyalgia about 3 years ago that is when everything went down hill, I try everything but no luck, last September I had horrible tension headaches that send me to hospital I was off from work for 3 weeks went back to work and it was miserable i finally out on disability since July 11 and it has been very hard I have more bad days than good, i have so much prescriptions that my fear is to become a drug addict, but the pain is so intense its hard no to take medicine.
My legs hurt so much, now my RA is acting up, not to mention i have uti most of times, las week i had horrible pain on my check by my ear because my saliva gland was swallowed, tired all the time,
I am going to star Lyrica hope that makes me feel better, I take 3 different meds for pain, but I am feeling worst I have anxiety and more depressed
Its hard I feel no one understands they think its all in my mind even my mother she is 82 and makes remarks that she feels better than me, and yes all the people telling me what to eat or drink or exercise they do not understand
I'm so sorry its been so hard for you! I definitely have a more mild form that I've managed to adapt to. I hope the Lyrica works out for you! I believe you should take as many drugs as your body needs, even if it seems like a lot or you become dependent on them, your wellbeing is more important, don't let anyone make you feel bad for needing them.
I love your glasses.
Hi! Good video! I´m sorry you lost your son - that's traumatic. An old Swedish study showed that in a testgroup of arthritics 100 % of the women had gone through some kind of trauma within a year from when they got their autoimmune desease. This is true also for me, it seems to be a general truth.
But you can't delete trauma. The accident has already happened and the body has reacted.
It's like loosing a leg. You can't get it back, but you can learn to live without it.
I have RA and Sjögren's syndrome + some more stuff. I have also been judged by people a lot, but they are so ignorent so let us just leave it and do our best, as you are. God bless!
i always thought auto immune disease are very probably often triggered by trauma/high stress...would love to find that research. Best of luck with everything :)
none of that stuff worked for me either. i went to the pain clinic, what a joke. dr. told me He knows about fibromyalgia. go to water therapy. I could barely make it to appt. with him. I started getting this in 97. if he doesn't have it then he does not know. I tell them I do not have a life and need something to help me be able to walk a couple days a week. get dismissed. thankyou for sharing what you do.
Thank you. We should all have a copy of this to show everyone we know. I have never made a comment before.
Thanks
You did a great 👍 👌 👏 video about expressing the situations you have been experiencing. Please share next updates, how are you doing . Connections are Needed either it's whatsapp or any other for sharing better solutions. I have been experiencing severe Dry eyes for more than 18 years. I haven't found good solutions for eyes. Hoping if this one eye condition had a solution it would have been super wherein other symptoms could be manageable.
I am praying for all of us.
I was diagnosed with chronic fatigue syndrome and fibromyalgia caused by covid 19 however since the end of the last month i woke up one morning and have felt a hell of a lot better since then i wonder if im just getting a weeks or a month of not much symptoms is that possible?
Miss your videos!
Amen sista!
I hear ya! I got all the time maybe you will feel better if you lose weight. Drives me crazy! On too of everything I had thyroid cancer and my thyroid was removed. I am good now though. I know people are trying to help but, they arent really helping us. Hang on there! Fingers crossed for cures for us!
I had fibromyalgia for at least 10 years before the classic Sjogren's (dry eye and dry mouth, fatigue) showed up. Plaquenil helped me a tremendous amount! I strongly suggest plaqueil. I also use Restasis and Xiidra eye drops. Finally, check into EyeEco eye covers for nighttime sleeping. The Plaquenil helped with fibro, dry mouth and the systemic issues, especially the fatigue. Homoeopathic does NOT work, I tried many.
I'll have to ask my rhuem about Xiidra since my eyes have been worse lately. Thanks for the tip!
I want the advice. I'll take all the advice I can get but then again I am 60 and although I've had Sjogren's since I was a teenager although undiagnosed I have treated each symptom separately. But I recently started low dose naltrexone to see if I can treat the whole thing. My biggest problem that I haven't been able to overcome is vaginal dryness which is worse for me because I have already been menopause. Gabapentin or neurontin made me neurotic and Lyrica made my eyesight worse. I do want to ask a question about the plaquenil. I have read where the plaquenil will help give you energy along with the low dose naltrexone. Do you think the plaquenil helps with your fatigue?
Instead of explaining to people about trying to help me with Sjogren's syndrome. From now on I'll just send them your video...sigh
The Lyrica did help but side effects where horrible so I had to stop so now I am trying Cbd oil seems to help Energy
hi paprika I hope your having a good day. I've been diagnosed with benign fasiculation syndrome and sjogrens. can I ask you how you cope I'm a 44 year old male from Manchester England. God bless
John Brooks have you tried low dose naltrexone yet? I am only on my second week but I am feeling less joint pain. I know your comment was two years ago but I wanted to see if you're doing better.
I, too, have Fibro and Sjogrens. Horrible. I've also gained a lot of weight
I get what you mean today I was given some awesome advice overall but then was told that there is no way I can have both fibro and sjogrens at the same time. I'm like WHAT!! Thank God **sarcasm**
Your video is bummer.. Is like there is no cure so I should give up. And take medication. And that sucks.
Huitzilli there's no cure for a lot of things but that doesn't mean you should give up! It's very manageable:)
hello ! just wanted to point out the poor quality sound of your video, pity :/ i made sure sound on my pc is at its maximum but i can barely hear (not using earphones/headset)
It must be on your end because the sound is fine.