Yesterday was an awful day for me! I had hoped at my doctors appointment that we would come up with a different medication combo or switch things around,taking one away,possibly adding another.
After getting there in the awful rain,in pain, I had to wait for 21/2 hrs before leaving.
The worst part was that the only change was an increase in 1 med,which I thought was unnecessary!
I am now going on about my fourth week of VERY LITTLE sleep. I have managed to get at least 2-3 hours in before daylight breaks.
O can’t sleep with the pain in my hands,and legs,not to mention the restlessness it causes me. I literally told him if I got no relief,that I believe I was gonna pull my hair out one piece at a time.
His answer"you know that I would rather try different options than adding more pain meds,or sleeping meds. I don’t believe this is all related to your Lupus,RA,and Fibro. I believe you also have some hormonal issues,let’s get some blood work."
I have worked and got a degree in the medical field,so I am not dumb about these things,as he knows. Sometimes I think they are tired of dealing with me and want me to hurry up and get to the next patient! Sleep… if it doesn’t come soon,I may just pull out my doctors hair instead! Then he might understand!
I am so sorry to hear you did'nt achieve anything with your Dr and it does become so flustrating when your getting to stages of needing furthur help and it's like a losing battle and some Dr's do think by upping meds that may achieve something where it can actually make that person feel alot worse.
How you've worked in the medical field and know what your talking about to some it can feel a threat.
I posted earlier that the last time i saw my rheumo he sent my dr a letter saying i was talking to him in "Terminology terms" which he said was wrong....i don't think so after 26yrs years of seeing consultants and knowing what alot of things are about.
hang in there marinesdaughter, God is always in control and he knows when to step in. The doctor is only human, but God has no degrees and all the answers. Trust me he has made a believer out of me more than once. Everytime I think that there is no hope, He comes in right on time. I will be sending up a prayer for you and my LWL family. Many blessings and hugs.
Nicely said fighter and there's always hope somewhere along the line. xxx
fighter said:
hang in there marinesdaughter, God is always in control and he knows when to step in. The doctor is only human, but God has no degrees and all the answers. Trust me he has made a believer out of me more than once. Everytime I think that there is no hope, He comes in right on time. I will be sending up a prayer for you and my LWL family. Many blessings and hugs.
Hi there marinesdaughter, I am so sorry you are feeling so awful. I do understand. I have felt like this so often myself. It seems never ending at times. I am very lucky though as far as my Rhuemy goes. I have had doctors though who have have seemed as though they havent listened to a word i have said which is really frustrating, or made assumptions just by looking at me from once glance, not an examination. There is one i now refuse to see she was so rude to me. It doesnt help that you havent been getting any sleep, sleep deprivation is one of the worst things you can have coupled along with the pain and everything else going on along with it. I would of thought that they would of tried to help give you something at least temporarily until they find out whats actually happening, so that you can at least can a few decent hours sleep. Sometimes i wonder what planet some of these doctors are actually on. But then, its not happening to them is it? I also think that some of these doctors find some of us far too complex to handle. I remember years back when i was first seeing a Rhuemy for my Lupus, this Rheumatologist i was seeing was useless and i was getting nowhere with him. Anyway one day, he says to me, "I am going to refer you to the big guns, you are far too complex for me to handle!". So i thought, ah now i get it, at least now i know why you havent been helping me all this time. It all makes sense now. I dont blame you for feeling the way you do. Can you speak to anyone else about this. Did anyone refer you to this doctor? Can you change doctors at all, or would that be too awkward or too damaging at this time? Or maybe there just isnt anyone else you could see? I had to change doctors about twelve years ago, i was scared of doing it at the time. At the end of the day though it was the best move i ever made. Anyway i really hope you get some answers soon, and that things get abit easier for you. I know what its like not to get enough sleep. I have sleep problems every night, if it wasnt for me catching a few naps here and there during the day, i dont know how i would cope. I am having a flare at the moment, and it is driving me crazy, so i am can totally empathise with you at the moment. I wish i could wave a magic wand and get rid of all your pain and everyone else's. Anyway good luck, take care, thinking of you, let us know how you get on, hang in there, bye for now, look after yourself, love and hugs Astrid40xoxo
I had issues with sleeping tried ambien tylenol pm and no relief. my Dr finally put me on Trazodone 500 mg I take 2 at night and it helps me get deep sleep for several hours.
Nice to hear your Drput you some medication to help you sleep and i really hope it's working wonders concerning your health and needing good rest.
Terri
Purplefav said:
I had issues with sleeping tried ambien tylenol pm and no relief. my Dr finally put me on Trazodone 500 mg I take 2 at night and it helps me get deep sleep for several hours.
Hello, first off I want to tell you to keep your head up I know its hard. but you do have to try. Secondly I know how you feel I been tring to get off these steriods for the pass 3 years but my dr just wont take me off of them and its getting to the point where its starting to bother my teeth any little thing and my teeth will crack and I hate it. maybe its time for you to look in to another dr. I know you may not want to, but there is nothing wrong with looking into it. alot of times the dr does try and rush us out cause they make there appt every 15 min and thats all we get is 15 min, so if you cant get your point across by then its like they dont want to hear anything else that we are talking about. I wish you all the luck in the world......
HA!HA!, that's exactly how i felt , wanted to pull all my hair off my entire body at one point . The pain is sometime to over whelmming to bare . But now i don't let the pain get the best of me !!! I fight it , and try not to fed into hurting , i just move if it's possible !!! smile Well hope that you and the doctors come up with something to help you with this and hope you get some sleep soon , talk with you later Beverly L.
Thanks to all for your prayers,kind words,and encouragement. To those of you who have had success with those certain sleep meds,you are so lucky! I have been on ALL those mentioned at one time or another. Before I was ‘officially’ diagnosed,I was experiencing intense pain and no sleep…some helped for short periods,then my tolerance would build quickly. Then for sometime it was like I had found the right med combo. Now we are back at the cycle beginning again and it seems that the change in dose is not helping I am very fortunate to have a doctor that is more than willing to take his time to listen,that is usually why patients are there so long for their visit. I’m not afraid to change doctors or get more than the 2 others I have. Right now I just mentally can’t deal with it,to much fog in my head…but I will pull through,I always have,even when they thought it was just ‘in my head’. My hands are so stiff and swollen that I can’t even use a keyboard…thank goodness for phones with swipe keyboards! I am curled up with my little Chi, Sassy. She can truly since when mom is not feeling well. She usually knows before I do.
Thanks again to everyone for your prayers and support!
I've just read what you put about your teeth and you being on steriods...they offered me prednisone over the phone from the hospital when first diagnosed but the sister said i was to take a tablet daily to help stop the prednisone causing me to have Osteoporosis because of my falls with my seizures as it cause brickle bones, i was just wondring if they've given you this tablet with it to stop that counter reaction (sorry but i can't think of the name of the tablet) ....as Osteoporosis can damage your teeth bad besides. xxx
tanya said:
Hello, first off I want to tell you to keep your head up I know its hard. but you do have to try. Secondly I know how you feel I been tring to get off these steriods for the pass 3 years but my dr just wont take me off of them and its getting to the point where its starting to bother my teeth any little thing and my teeth will crack and I hate it. maybe its time for you to look in to another dr. I know you may not want to, but there is nothing wrong with looking into it. alot of times the dr does try and rush us out cause they make there appt every 15 min and thats all we get is 15 min, so if you cant get your point across by then its like they dont want to hear anything else that we are talking about. I wish you all the luck in the world......
Are you talking about fallzamacks(spell check). My pcp just offered it to me. Tez_20 said:
Hello Tanya,
I've just read what you put about your teeth and you being on steriods...they offered me prednisone over the phone from the hospital when first diagnosed but the sister said i was to take a tablet daily to help stop the prednisone causing me to have Osteoporosis because of my falls with my seizures as it cause brickle bones, i was just wondring if they've given you this tablet with it to stop that counter reaction (sorry but i can't think of the name of the tablet) ....as Osteoporosis can damage your teeth bad besides. xxx
tanya said:
Hello, first off I want to tell you to keep your head up I know its hard. but you do have to try. Secondly I know how you feel I been tring to get off these steriods for the pass 3 years but my dr just wont take me off of them and its getting to the point where its starting to bother my teeth any little thing and my teeth will crack and I hate it. maybe its time for you to look in to another dr. I know you may not want to, but there is nothing wrong with looking into it. alot of times the dr does try and rush us out cause they make there appt every 15 min and thats all we get is 15 min, so if you cant get your point across by then its like they dont want to hear anything else that we are talking about. I wish you all the luck in the world......
Even though you've mentioned the name i still can't recall it for sure sorry but it is a tablet that matches up with the steriod to stop these affects.
Tanya i've just checked the name of the tablet you've given and can i find it no way...the spelling must be incorrect.
Terri xxx
tanya said:
Are you talking about fallzamacks(spell check). My pcp just offered it to me. Tez_20 said:
Hello Tanya,
I've just read what you put about your teeth and you being on steriods...they offered me prednisone over the phone from the hospital when first diagnosed but the sister said i was to take a tablet daily to help stop the prednisone causing me to have Osteoporosis because of my falls with my seizures as it cause brickle bones, i was just wondring if they've given you this tablet with it to stop that counter reaction (sorry but i can't think of the name of the tablet) ....as Osteoporosis can damage your teeth bad besides. xxx
tanya said:
Hello, first off I want to tell you to keep your head up I know its hard. but you do have to try. Secondly I know how you feel I been tring to get off these steriods for the pass 3 years but my dr just wont take me off of them and its getting to the point where its starting to bother my teeth any little thing and my teeth will crack and I hate it. maybe its time for you to look in to another dr. I know you may not want to, but there is nothing wrong with looking into it. alot of times the dr does try and rush us out cause they make there appt every 15 min and thats all we get is 15 min, so if you cant get your point across by then its like they dont want to hear anything else that we are talking about. I wish you all the luck in the world......
I have a dr appt on monday and I will let you know of the spelling. I know it has something to do with calcium. Tez_20 said:
Hi Tanya,
Even though you've mentioned the name i still can't recall it for sure sorry but it is a tablet that matches up with the steriod to stop these affects.
Tanya i've just checked the name of the tablet you've given and can i find it no way...the spelling must be incorrect.
Terri xxx
tanya said:
Are you talking about fallzamacks(spell check). My pcp just offered it to me. Tez_20 said:
Hello Tanya,
I've just read what you put about your teeth and you being on steriods...they offered me prednisone over the phone from the hospital when first diagnosed but the sister said i was to take a tablet daily to help stop the prednisone causing me to have Osteoporosis because of my falls with my seizures as it cause brickle bones, i was just wondring if they've given you this tablet with it to stop that counter reaction (sorry but i can't think of the name of the tablet) ....as Osteoporosis can damage your teeth bad besides. xxx
tanya said:
Hello, first off I want to tell you to keep your head up I know its hard. but you do have to try. Secondly I know how you feel I been tring to get off these steriods for the pass 3 years but my dr just wont take me off of them and its getting to the point where its starting to bother my teeth any little thing and my teeth will crack and I hate it. maybe its time for you to look in to another dr. I know you may not want to, but there is nothing wrong with looking into it. alot of times the dr does try and rush us out cause they make there appt every 15 min and thats all we get is 15 min, so if you cant get your point across by then its like they dont want to hear anything else that we are talking about. I wish you all the luck in the world......
How did it go with the doctor's and the tablet for calcium because that is what it's for to keep calcium in your body and to stop the steriod drugs causing anything.
I hope it went well. Terri xxx
tanya said:
I have a dr appt on monday and I will let you know of the spelling. I know it has something to do with calcium. Tez_20 said:
Hi Tanya,
Even though you've mentioned the name i still can't recall it for sure sorry but it is a tablet that matches up with the steriod to stop these affects.
Tanya i've just checked the name of the tablet you've given and can i find it no way...the spelling must be incorrect.
Terri xxx
tanya said:
Are you talking about fallzamacks(spell check). My pcp just offered it to me. Tez_20 said:
Hello Tanya,
I've just read what you put about your teeth and you being on steriods...they offered me prednisone over the phone from the hospital when first diagnosed but the sister said i was to take a tablet daily to help stop the prednisone causing me to have Osteoporosis because of my falls with my seizures as it cause brickle bones, i was just wondring if they've given you this tablet with it to stop that counter reaction (sorry but i can't think of the name of the tablet) ....as Osteoporosis can damage your teeth bad besides. xxx
tanya said:
Hello, first off I want to tell you to keep your head up I know its hard. but you do have to try. Secondly I know how you feel I been tring to get off these steriods for the pass 3 years but my dr just wont take me off of them and its getting to the point where its starting to bother my teeth any little thing and my teeth will crack and I hate it. maybe its time for you to look in to another dr. I know you may not want to, but there is nothing wrong with looking into it. alot of times the dr does try and rush us out cause they make there appt every 15 min and thats all we get is 15 min, so if you cant get your point across by then its like they dont want to hear anything else that we are talking about. I wish you all the luck in the world......
I am very fortunate to have a doctor that is more than willing to take his time to listen,that is usually why patients are there so long for their visit. I’m not afraid to change doctors or get more than the 2 others I have. Right now I just mentally can’t deal with it,to much fog in my head…but I will pull through,I always have,even when they thought it was just ‘in my head’. My hands are so stiff and swollen that I can’t even use a keyboard…thank goodness for phones with swipe keyboards! I am curled up with my little Chi, Sassy. She can truly since when mom is not feeling well. She usually knows before I do.