I am just wondering what type of pain meds they have you on? I am trying my first one and it gives me some relief but it makes me so tired as if I need something to help that. I am newly diagnosed with both Lupus as Fibromyalgia. Thanks for what you are doing to get the word out and educate others on these silent EVILS I call them. Hope you as feeling as good as you can be! Take Care!
@spahottie I would let my doc know about how the pain med is making you feel. It might be to strong. I'm on some strong narcotics and it doesn't make me feel tired. I take a pill and have a pain patch. If there are times I have break through pain I have a smaller dose immediate acting pain pill that I take. The pain medication takes the edge off of my pain but it doesn't take pain completely away. :( You want your meds at the right dosage because you do not want to be adding extra medications.
@thelmalou475 My endocrinologist won't let me touch any kind of herbal remedies because they will react with all my replacement hormones. My rheumatologist has me on fish oil to help with imflammation. Other times I thought I would just quit all my meds because you get so tired of taking them... well I wasn't the smartest cookie in the box when I did that... I ended up in the hospital twice.
hi i realy fel for you i have fibromaigia and am seeing my rhuematiod specialit for the first time tommorrow im not sure abour about the lups uvhad the butterfly rashi have to take photos into secialist im praying he can help i certainly cant afford him but im in so much pain everydayi need to work out what is going on every day my musccels make me want to scream and joints are almy lower back and hip my mum has lups my nen had fibro so chances ar i might have both take care ty
why cant you do any of the natural or herbal things? i also have s.l.e. lupus as well as fibromyalgia. im trying all that i know how to understand lupus and im still lost its so many symptoms and so much pain its all so much.
@66godsgirl I have tried the natural route and I ended up in the hospital each time. The best form of treatment for me has been the cytoxan infusions as it shuts down my immune system. Lupus is an overactive immune system. Most of the natural remedies are immune boosters and they make the lupus flare worse. It is confusing because no two peoples symptoms are alike. You need to work closely with your doctor over time and figure out what is best for your symptoms. Make sure your doc listens!!!
I wish for you remmission...and all who suffer from this disease...Benylsta is the medication that is now in FDA approval to treat Lupus...hope it will be a milestone...I am currently on Plaquenil, prednisone, and Imuran (chemo). I take pain medication and others to...I have Fibromyalgia and Raynauds...and other conditions...I agree with a lot of what you say about working with your doctor...I have you in my prayers everyday and night...You are very strong to do these video's and keep going...
@dooners2u Are you in remission? I have not been in remission for the last 7 years. I don't know what it will feel like. Will it be like I was before all this or just somewhere in between? Yeah, my list of meds go on and on like yours. I see people that plaquenil is all they take and I just don't understand when mine takes a small pharmacy and I'm still very sick. I'm happy for them... I just wish I was one of them also. lol
Hi; I;m sorry that you are going through both Lupus & Fibro.. I have Fibro and it by itself can be a challange.. Please feel free to message me to talk! Take care
@tiredofbeingsick Thanks for commenting to me. Having both is difficult most days. The pain is just everywhere. Muscle and joint pain. Argh! You can also message me anytime you want. I'm homebound so I can say that I am always here.
i use cannabis for my pain due to arthritis & fibro... it does wonders!
beadwired 1 month ago
@beadwired I have heard that medicinal cannibas has helped many. I'm glad you found relief.
treappling1 1 month ago
I am just wondering what type of pain meds they have you on? I am trying my first one and it gives me some relief but it makes me so tired as if I need something to help that. I am newly diagnosed with both Lupus as Fibromyalgia. Thanks for what you are doing to get the word out and educate others on these silent EVILS I call them. Hope you as feeling as good as you can be! Take Care!
spahottie 1 year ago
@spahottie I would let my doc know about how the pain med is making you feel. It might be to strong. I'm on some strong narcotics and it doesn't make me feel tired. I take a pill and have a pain patch. If there are times I have break through pain I have a smaller dose immediate acting pain pill that I take. The pain medication takes the edge off of my pain but it doesn't take pain completely away. :( You want your meds at the right dosage because you do not want to be adding extra medications.
treappling1 1 year ago
@thelmalou475 My endocrinologist won't let me touch any kind of herbal remedies because they will react with all my replacement hormones. My rheumatologist has me on fish oil to help with imflammation. Other times I thought I would just quit all my meds because you get so tired of taking them... well I wasn't the smartest cookie in the box when I did that... I ended up in the hospital twice.
treappling1 1 year ago
hi i realy fel for you i have fibromaigia and am seeing my rhuematiod specialit for the first time tommorrow im not sure abour about the lups uvhad the butterfly rashi have to take photos into secialist im praying he can help i certainly cant afford him but im in so much pain everydayi need to work out what is going on every day my musccels make me want to scream and joints are almy lower back and hip my mum has lups my nen had fibro so chances ar i might have both take care ty
Candiceseesu 1 year ago
@Candiceseesu How did your visit to the specialist go? Have you got any relief from the pain? I hope you are feeling better.
treappling1 1 year ago
why cant you do any of the natural or herbal things? i also have s.l.e. lupus as well as fibromyalgia. im trying all that i know how to understand lupus and im still lost its so many symptoms and so much pain its all so much.
66godsgirl 1 year ago
@66godsgirl I have tried the natural route and I ended up in the hospital each time. The best form of treatment for me has been the cytoxan infusions as it shuts down my immune system. Lupus is an overactive immune system. Most of the natural remedies are immune boosters and they make the lupus flare worse. It is confusing because no two peoples symptoms are alike. You need to work closely with your doctor over time and figure out what is best for your symptoms. Make sure your doc listens!!!
treappling1 1 year ago
Thank you everyone for the encouragement. I'm just like you I have my good days and my bad.
treappling1 1 year ago
Will keep U in prayer U seem really sweet n strong keep on pushin
GodIsReal24 1 year ago
Really informative video, Tremia. Thanks so much and keep it up!
oklupus 1 year ago
I wish for you remmission...and all who suffer from this disease...Benylsta is the medication that is now in FDA approval to treat Lupus...hope it will be a milestone...I am currently on Plaquenil, prednisone, and Imuran (chemo). I take pain medication and others to...I have Fibromyalgia and Raynauds...and other conditions...I agree with a lot of what you say about working with your doctor...I have you in my prayers everyday and night...You are very strong to do these video's and keep going...
dooners2u 1 year ago
@dooners2u Are you in remission? I have not been in remission for the last 7 years. I don't know what it will feel like. Will it be like I was before all this or just somewhere in between? Yeah, my list of meds go on and on like yours. I see people that plaquenil is all they take and I just don't understand when mine takes a small pharmacy and I'm still very sick. I'm happy for them... I just wish I was one of them also. lol
treappling1 1 year ago
Hi; I;m sorry that you are going through both Lupus & Fibro.. I have Fibro and it by itself can be a challange.. Please feel free to message me to talk! Take care
tiredofbeingsick 1 year ago
@tiredofbeingsick Thanks for commenting to me. Having both is difficult most days. The pain is just everywhere. Muscle and joint pain. Argh! You can also message me anytime you want. I'm homebound so I can say that I am always here.
treappling1 1 year ago