I saw my rheumy today and we talked about my Lupus and some newer symptoms (dry eyes, cold hands and feet, etc.). The good news is that since I have had Lupus for more than five years and haven't had internal organ involvement, my rheumy feels that I won't. The bad news is that she told me that flare or no flare, I could be dealing with the fatigue and joint/muscle pain daily for the rest of my life. She said Plauquenil, which I've been on off and on for years should be helping with the fatigue. She said there could be some other autoimmune things going on, because those of us with autoimmune problems tend to get them in clusters (I already have Alopecia Totalis and Type 1 Diabetes in addition to the Lupus). I know my rheumy cares about me and wants to help me, but I left there feeling so frustrated and down-hearted, thinking about living out my years in pain and not having the energy to do the things I used to do. I know...I should be counting my blessings (especially with the double jeopardy of having Diabetes, too) that I haven't had any internal organ involvement and chances are I may never. I should also be thankful that I am not in the midst of a full-fledged flare. I am just still grieving the person I used to be and have really struggled with the pain and fatigue, especially in the last year and a half. Will I ever get beyond these feelings? Just when I think I have reached acceptance...I some how end up back at frustrated and down-hearted. :-(
I went to pain mgmt and they have worked with me. I would of done anything to get outta pain. They took 1 issue at a time and worked out the kinks. Then started on the next. It took me along time to find a dr that I trusted and he trusted me. (I’ve delt with them over 15 years) I have good days and I have great days. But I have medication to help me make it through those ‘good’ days. May God guide you towards a trusted doctor who can help relieve Your symptoms. I was a lot like you before I found a good pain mgmt.
Lorie
JDT,
After every Dr. appt, I have to mourn for a while, taking in the worst case scenario doctors usually tell us, then I remind myself that since they are doctors, they rarely see those who have gotten better, so their idea is slightly slanted toward the only thing they see, the worst case scenario. Of course there are chances you'll get feeling better. That's the whole nature of lupus, that it has remissions, or some areas of inflammation settle down while others get involved. On the other hand, it is quite daunting to accept our illness, and mourn the old person we were, and adapt to a "new normal". We mourn dreams and abilities that we no longer have, over and over again, and go through the 5 stages of grief. Denial, anger, bargaining, adjustment, acceptance, over and over. It's much like an elderly person having to accept his/her new limitations, but ours comes so much earlier and people and even doctors don't understand it all. Just take things one day, or one hour at a time. It's too overwhelming to look at your whole future all at once.
Best wishes, Sheila
Try to look at the positive things. I no it can be so hard to do. rest and take care of yourself . I will be thinking of you .
I too have lupus. Since 1996. I push myself so many days just to get out of bed. Most of my constant aching pain is in my hips and legs. My Dr. Just put me on neurotic to try for the pain. Just started it and last night I really slept well without tossing and turning. So glad you have a Dr. That does care.
When your body tells you it’s fatigued try and rest. My husband passed away in Dec. , so now I have to cut grass and do the things he always did. It really wears me down for a cou
Sheila is right… try not to take the prognosis of a Dr as gospel. They have no way to know what your individual capabilities and nuances are. If you pin yourself to the mindset that there is no room for improvement, you’ll miss a lot of good that comes along. Don’t feed negative expectations. Your energy has much better uses.
Hi Sheila, I think we all share your pain. It's always good to count your blessings. It's also completely normal to grieve the things that used to be. I am seeing a therapist who is helping me learn to let the feelings wash through me rather than trying so hard not to feel them. It seems to be helping as I don't feel as depressed.
I really hope you find some relief with the Neurontin and that the Plaquenil kicks in soon as well. Plaquenil does take awhile but it sure did help me with my joint pain and swelling, not as much as I'd hoped with the fatigue. You might also get your vitamin D, B12 and Folate levels checked. People with autoimmune disease tend to be low in these. I am also looking for a pain management doc but so far haven't found one. Hope we both find help soon! I'll be thinking of you.
I know it’s hard to focus in on the positives. But the fact that you have no organ involvement should give you a lot of hope for improvement And a extended normal life expectancy because once you have organ involvement like me there is a drastic difference in HOPE for improvement and my life expectancy is far less now with my severe organ involvement. I have made many adjustments to life styles and nutrition that has brought some positives but I always think id feel sooo much better without my Kidney and Thyroid involvement. I am sorry if I sound too blunt, but I am having an extremely painful day shut in my bedroom with blinds drawn…moaning from the pain.
dealing with chronic illness is just sad and not fun. I would think that after having various autoimmune diseases that nothing would upset as original diagnosis but it happen. See i always have just pushed to enjoy life.
I recently was diagnosed with spondylitis throughout my spine and hips. I love hiking in the high mountains and figured if i could not hike far, well, i could ride a horse in or out if i hurt too much. I also have been on narcotic pain patches which i found out just how dependant my body is after 8 plus years...when i went into withdrawal few months ago.
My husband who normally is very understanding especially now that he has severe arthritis and his own disease, said to me that our hiking days are over and doubts i could even ride horse now with this new disease.
I just got so depressed...still am. I always just push or fight to find a way to do things i enjoy so life has meaning. I was not able to have children most likely due to lupus so i do not have much family and it is always other's kids. Just what is there to enjoy?
So i get it...i need to grieve again and so do you and we most likely will off and on for rest of our lives. Guess really depends on your age. For those in their 20's they actually have a lot of hope that they will find cure or ways to deal with autoimmune diseases. They are about there now so we might get lucky.
I am sorry you are down in dumps too. Just know that it takes time and hopefully you will fight it and find things that give your life meaning and joy. I am determined too bet you are too!
But first we grieve.
jdt,
Just because your Rheumy said you "might" continue to have these problems you also "might not". Keep that in the front of your mind and remember what you CAN do not what you can't.
We are here for you anytime.
DeAnne
It dose get better, but you will feel like that sometimes when you are having a flare. I think you will get to a point where your not so tired, just make sure you rest and take care of yourself. I have had some really bad times,but I'm feeling pretty good right now. don't give up.
Thank you so much for the encouragement! It means so much! :-)
sid99 said:
It dose get better, but you will feel like that sometimes when you are having a flare. I think you will get to a point where your not so tired, just make sure you rest and take care of yourself. I have had some really bad times,but I'm feeling pretty good right now. don't give up.
Thank you so much for the encouragement! I wish you well too! :-)
siskiyousis said:
dealing with chronic illness is just sad and not fun. I would think that after having various autoimmune diseases that nothing would upset as original diagnosis but it happen. See i always have just pushed to enjoy life.
I recently was diagnosed with spondylitis throughout my spine and hips. I love hiking in the high mountains and figured if i could not hike far, well, i could ride a horse in or out if i hurt too much. I also have been on narcotic pain patches which i found out just how dependant my body is after 8 plus years...when i went into withdrawal few months ago.
My husband who normally is very understanding especially now that he has severe arthritis and his own disease, said to me that our hiking days are over and doubts i could even ride horse now with this new disease.
I just got so depressed...still am. I always just push or fight to find a way to do things i enjoy so life has meaning. I was not able to have children most likely due to lupus so i do not have much family and it is always other's kids. Just what is there to enjoy?
So i get it...i need to grieve again and so do you and we most likely will off and on for rest of our lives. Guess really depends on your age. For those in their 20's they actually have a lot of hope that they will find cure or ways to deal with autoimmune diseases. They are about there now so we might get lucky.
I am sorry you are down in dumps too. Just know that it takes time and hopefully you will fight it and find things that give your life meaning and joy. I am determined too bet you are too!
But first we grieve.
Thank you! :-)
sid99 said:
It dose get better, but you will feel like that sometimes when you are having a flare. I think you will get to a point where your not so tired, just make sure you rest and take care of yourself. I have had some really bad times,but I'm feeling pretty good right now. don't give up.
I'm so sorry. I know I should count my blessings! I hope things get better for you!
Dvdom3 said:
I know it's hard to focus in on the positives. But the fact that you have no organ involvement should give you a lot of hope for improvement And a extended normal life expectancy because once you have organ involvement like me there is a drastic difference in HOPE for improvement and my life expectancy is far less now with my severe organ involvement. I have made many adjustments to life styles and nutrition that has brought some positives but I always think id feel sooo much better without my Kidney and Thyroid involvement. I am sorry if I sound too blunt, but I am having an extremely painful day shut in my bedroom with blinds drawn......moaning from the pain.
Thank you for the encouragement! I wouldn't wish this on anyone, but it is comforting to know that there are people like me, who understand what I am going through.
Tala said:
Sheila is right.. try not to take the prognosis of a Dr as gospel. They have no way to know what your individual capabilities and nuances are. If you pin yourself to the mindset that there is no room for improvement, you'll miss a lot of good that comes along. Don't feed negative expectations. Your energy has much better uses.
Thank you Sheila!
Sheila W. said:
JDT,
After every Dr. appt, I have to mourn for a while, taking in the worst case scenario doctors usually tell us, then I remind myself that since they are doctors, they rarely see those who have gotten better, so their idea is slightly slanted toward the only thing they see, the worst case scenario. Of course there are chances you'll get feeling better. That's the whole nature of lupus, that it has remissions, or some areas of inflammation settle down while others get involved. On the other hand, it is quite daunting to accept our illness, and mourn the old person we were, and adapt to a "new normal". We mourn dreams and abilities that we no longer have, over and over again, and go through the 5 stages of grief. Denial, anger, bargaining, adjustment, acceptance, over and over. It's much like an elderly person having to accept his/her new limitations, but ours comes so much earlier and people and even doctors don't understand it all. Just take things one day, or one hour at a time. It's too overwhelming to look at your whole future all at once.
Best wishes, Sheila
Thank you Lorie!
Lorie said:
I went to pain mgmt and they have worked with me. I would of done anything to get outta pain. They took 1 issue at a time and worked out the kinks. Then started on the next. It took me along time to find a dr that I trusted and he trusted me. (I've delt with them over 15 years) I have good days and I have great days. But I have medication to help me make it through those 'good' days. May God guide you towards a trusted doctor who can help relieve Your symptoms. I was a lot like you before I found a good pain mgmt.
Lorie
Hi, sorry that you are down ! Hay am going to share something that my son turned me on to, it Music!! I don’t know kind of music you listen to, but I think this might help you . You have listen to the song, then listen to the words , then look at the words , understand before hand am just passing something to you and others when you ar feeling down!! It really helped me, here goes: the artist name is Rihana, the two songs are 1.Right now and 2.What now , the album is unapologetic, yeah I thought it would be something crazy!, when I saw the album cover, but the songs are so up lifting to me ,just the music itself remind me of the old me, me and the oldest and youngest grands jump around acting crazie!!! Then I have to really sit down to rest , they move around alot dancing and holding my hands to dance with them. It is just something that helps me and hope that it moves your spirits a little…Beverly L.