Helloooooooooooo
Boy, I am so tired! Hi Warriors! It is meeeeee! I have been volunteering at a Senior Center, and afraid I am fitting right in with this group! Eeeek! I present my current situation, and would like any input you may have. I had a full work up of blood work. I went to a neurologist, and have peripheral neuropathy in my feet. I still have the "touch your chin to your chest, and get shocked down to my feet and I am 5 years out. Since volunteering I am even more exhausted! Blood work came up showing Rheumatoid Arthritis. I do not have pain, so went to an RA specialist to see, and if so, can I head it off. He does not believe I have RA. After reading my history, and dry mouth, nose, eyes, neuropathy fatigue, hair loss, he is thinking Sjogren's syndrome. I had more blood drawn, and will know next week if it is positive. Very simple, and can be treated easily. I was also previously tested for Lymes disease, which was negative. He says that I should not be this tired this far out of treatment, although I am no spring chicken! Ha ha ha! I know most of us are exhausted. I really would like to know if anyone has pursued this further as I am doing? I actually would prefer if it comes back positive, because then I would have an answer, and could be treated. I broke yet anoher tooth, so I see dentures in my future. At least I can get advice and referrals from my Seniors at the Center. I have been volunteering and receiving food in exchange for my work. The cook is a retired Chef, and makes delicious healthy food, with 3 choices per day, from salad to dessert, so my weight is on its way up! Better then living on the Ensure anyday! Lol! Praying you are all doing well, and being your own advocate, fighting for what you KNOW your body is going through. These doctors do not have all the answers, so we must be pro-active, which is a job in itself! No wonder we are tired! 
Love & Prayers,
Patty
Comments
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this was a 3 nap post
Patty,
Helloooooooooo yourself.
When you solve the mystery of being tired please wake me and let me know what the heck it is.
At 3 years out I am very tired. I eat right, sleep right, my thyroid is dialed in and my blood tests say normal. I haven’t tried energy drinks or 5-Hour energy, but I do drink coffee (for what it is worth).
All I have to compare to was life before treatment where “I WAS NOT TIRED”.
There, I did not solve a thing, but I do support your quest for answers.
Matt
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ZZzzzzzzCivilMatt said:this was a 3 nap post
Patty,
Helloooooooooo yourself.
When you solve the mystery of being tired please wake me and let me know what the heck it is.
At 3 years out I am very tired. I eat right, sleep right, my thyroid is dialed in and my blood tests say normal. I haven’t tried energy drinks or 5-Hour energy, but I do drink coffee (for what it is worth).
All I have to compare to was life before treatment where “I WAS NOT TIRED”.
There, I did not solve a thing, but I do support your quest for answers.
Matt
Ohhh Matt, I am so tired of being tired - it HAS to be more than the treatment! I never drank the energy drinks, and only have my precious coffee in the morning for a jump start. Yes all my other blood work was fine. I will check back in when I get the results of this simple blood test to see if it is this disease of the auto-immune system. Meanwhile, enjoy your nap, but believe there are answers out there! I refuse to accect the excuses they were handing me.
Yes JG! Of course, you being the King Abi had to comment first!
What a group we are!!!!
Love you guys anyway!
Patty
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Sorry you are always tired.....
Sorry Patty you are staying so tired. With the blood work being good, and did they check for vitiam D being low. It is not always checked and a low is 30 and I was down so low it just said "less than 5" [lack of sun] but it can make you tired, so I have to take 5000ui every day and it is now after five months up to 32, still low so I'll be on 5000 for some time. Also I would guess the thyroid was checked. My question is, do you find your self breathing shallow and not taking deep breaths? Just for kicks, try to remember to exhale when you are going to stand or sit. Don't hold your breath or inhale as you stand. You might also try to cross your arms in frount of your chest and inhale as you raise them just over your head and exhale as you bring them back down. Do this while sitting is best and do about four or five. It will let you take in more air and exhale a lot more which gets rid of CO2. Sounds silly but it will help. I have severe COPD and have gone through rehab for it and I don't get as short of breath or tired.
P.S. I still fall asleep in a chair but that just an age thing. LOL
I hope they do find what is causing this. Best of luck.
Bill
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Bawahahahaaa...pattyanny said:ZZzzzzzz
Ohhh Matt, I am so tired of being tired - it HAS to be more than the treatment! I never drank the energy drinks, and only have my precious coffee in the morning for a jump start. Yes all my other blood work was fine. I will check back in when I get the results of this simple blood test to see if it is this disease of the auto-immune system. Meanwhile, enjoy your nap, but believe there are answers out there! I refuse to accect the excuses they were handing me.
Yes JG! Of course, you being the King Abi had to comment first!
What a group we are!!!!
Love you guys anyway!
Patty
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Patty, so good to hear from
Patty, so good to hear from you! i am also 5 yrs out and i am just now starting to feel tired all the time. my teeth are also going bad. I had to have one pulled last Nov and today my very front tooth is chipped and i have to see the dentist Tues. All of my teeth look bad now and i find that very depressing b/c i always took good care of my teeth. oh, well, we know the gift just keeps on giving, but i see dentures in my futrue too :0( If you find the answer to being tired, please let us all know. praying you get the answer soon.
God bless you,
dj
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Hi Billwmc said:Sorry you are always tired.....
Sorry Patty you are staying so tired. With the blood work being good, and did they check for vitiam D being low. It is not always checked and a low is 30 and I was down so low it just said "less than 5" [lack of sun] but it can make you tired, so I have to take 5000ui every day and it is now after five months up to 32, still low so I'll be on 5000 for some time. Also I would guess the thyroid was checked. My question is, do you find your self breathing shallow and not taking deep breaths? Just for kicks, try to remember to exhale when you are going to stand or sit. Don't hold your breath or inhale as you stand. You might also try to cross your arms in frount of your chest and inhale as you raise them just over your head and exhale as you bring them back down. Do this while sitting is best and do about four or five. It will let you take in more air and exhale a lot more which gets rid of CO2. Sounds silly but it will help. I have severe COPD and have gone through rehab for it and I don't get as short of breath or tired.
P.S. I still fall asleep in a chair but that just an age thing. LOL
I hope they do find what is causing this. Best of luck.
Bill
Yes, I am low on the Vitamin D, but not THAT low! You were really down! I am glad it came up to over 30 for you. Yes I had the thyroid checked. I really never thought about my breathing Bill - Lol! Now I am sitting here wondering?????? I will try this exercise though, and be aware of how I stand up after sitting. Hmmmm..... Yes, I am hoping for an answer. My Onco told me "Oh, you are just bored." Hello? What kind of answer is THAT? Thank you for your advice, and I am pulling the vitamin D's out of the cabinet, and will start taking them again. (I cannot remember to keep taking them - chemo fog!) I will get back to you, as I WILL get to the bottom of this! And by the way - you are NOT old! Thanks for posting. Take care of yourself.
Patty
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Hi dj, Have you had yourdebbiejeanne said:Patty, so good to hear from
Patty, so good to hear from you! i am also 5 yrs out and i am just now starting to feel tired all the time. my teeth are also going bad. I had to have one pulled last Nov and today my very front tooth is chipped and i have to see the dentist Tues. All of my teeth look bad now and i find that very depressing b/c i always took good care of my teeth. oh, well, we know the gift just keeps on giving, but i see dentures in my futrue too :0( If you find the answer to being tired, please let us all know. praying you get the answer soon.
God bless you,
dj
Hi dj, Have you had your bloodwork done lately? I lose a tooth a year it seems. This one they want to cap for a whopping $900.00! Great! Do I really have a choice? I too always was great taking care of my teeth. It is so upsetting to watch them deteriorate! They can bond the front tooth and it will look just as good as new! The match the color and it takes no time at all. I am kind of hoping this blood test is positive, so I know what I am dealing with. I will get back to you. Meanwhile, good luck at the dentist, and hope everything goes smoothly. Thank you for the prayers, much appreciated, and I am living proof He hears them!
God Bless You Too!
Patty
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Wow, same symptoms here
Hi Patty
Now you REALLY have my attention. I have an appointment tomorrow to see a neurologist, because I still have symptoms consistent with peripheral neuropathy. L'Hermittes Sign is mostly gone for me, although I do still get a bit of a twinge when I look down. My twinges, numbness and pains are in my shoulders, arms and hands rather than feet. I'll be five years out in May. Interesting that the new oncologist at my cancer center, after hearing my symptoms, told me that he wanted to send me to a Rheumatologist. I have no pain, and I don't suffer from inflammation, so I have been questioning his diagnosis of Rheumatoid Arthritis. I will read up on the syndrome you describe, and wait to hear back.
Deb
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tiredD Lewis said:Wow, same symptoms here
Hi Patty
Now you REALLY have my attention. I have an appointment tomorrow to see a neurologist, because I still have symptoms consistent with peripheral neuropathy. L'Hermittes Sign is mostly gone for me, although I do still get a bit of a twinge when I look down. My twinges, numbness and pains are in my shoulders, arms and hands rather than feet. I'll be five years out in May. Interesting that the new oncologist at my cancer center, after hearing my symptoms, told me that he wanted to send me to a Rheumatologist. I have no pain, and I don't suffer from inflammation, so I have been questioning his diagnosis of Rheumatoid Arthritis. I will read up on the syndrome you describe, and wait to hear back.
Deb
Patty, I always know I'm going to have an RA flare because I become exhausted. Will be interesting to know about your blood work. Hundreds of types of arthritis and Sjogren's is one.
However, Jim is 5 years out from diagnosis and successful treatment and he has some very tired days.
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Patty, i just had blood workpattyanny said:Hi dj, Have you had your
Hi dj, Have you had your bloodwork done lately? I lose a tooth a year it seems. This one they want to cap for a whopping $900.00! Great! Do I really have a choice? I too always was great taking care of my teeth. It is so upsetting to watch them deteriorate! They can bond the front tooth and it will look just as good as new! The match the color and it takes no time at all. I am kind of hoping this blood test is positive, so I know what I am dealing with. I will get back to you. Meanwhile, good luck at the dentist, and hope everything goes smoothly. Thank you for the prayers, much appreciated, and I am living proof He hears them!
God Bless You Too!
Patty
Patty, i just had blood work done Monday and all is fine except my vit d is a little low so going to start meds for that. i went to dentist today and i need crowns on 2 teeth, the chipped one and the one next to it. i get the crowns 3/20. i am scared to death as I cannot stand the thought of a needle in the front of my mouth so i'm strongly considering doing it w/o nobicane. anyway, be sure to let us know what you find out and i will continue to pray for you friend.
dj
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Hi Pattypattyanny said:Hi dj, Have you had your
Hi dj, Have you had your bloodwork done lately? I lose a tooth a year it seems. This one they want to cap for a whopping $900.00! Great! Do I really have a choice? I too always was great taking care of my teeth. It is so upsetting to watch them deteriorate! They can bond the front tooth and it will look just as good as new! The match the color and it takes no time at all. I am kind of hoping this blood test is positive, so I know what I am dealing with. I will get back to you. Meanwhile, good luck at the dentist, and hope everything goes smoothly. Thank you for the prayers, much appreciated, and I am living proof He hears them!
God Bless You Too!
Patty
I am so glad to see you doing well, thanks for dropping in.
Tim Hondo
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Hi PattyNoellesmom said:tired
Patty, I always know I'm going to have an RA flare because I become exhausted. Will be interesting to know about your blood work. Hundreds of types of arthritis and Sjogren's is one.
However, Jim is 5 years out from diagnosis and successful treatment and he has some very tired days.
This recovery process even after 5 years is a pain! You sure look healthy though! Keep up that positive spirit...Glad to hear from you.
Best
Steve
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patty, had blood drawn Mondaypattyanny said:Hi dj, Have you had your
Hi dj, Have you had your bloodwork done lately? I lose a tooth a year it seems. This one they want to cap for a whopping $900.00! Great! Do I really have a choice? I too always was great taking care of my teeth. It is so upsetting to watch them deteriorate! They can bond the front tooth and it will look just as good as new! The match the color and it takes no time at all. I am kind of hoping this blood test is positive, so I know what I am dealing with. I will get back to you. Meanwhile, good luck at the dentist, and hope everything goes smoothly. Thank you for the prayers, much appreciated, and I am living proof He hears them!
God Bless You Too!
Patty
patty, had blood drawn Monday and the results are all ok except my vit d is low. not too bad though. went to dentist Tues. and i need two crowns for $1000 each, yikes!! thank goodness i have ins that will cover it all. the worst part is the thought of a needle in the front part of my mouth. the dentist called me in an "i don't care" pill to take before my appointment time so I hope that helps me. i'm truly considering having it done w/o being numb. i truly am petrified of the needle, literally!! i hope your teeth stop deteriorating. it is sad that our teeth take such a big hit :0( take care Patty. YOu look very good and healthy.
God bless you,
dj
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Hey!!!debbiejeanne said:patty, had blood drawn Monday
patty, had blood drawn Monday and the results are all ok except my vit d is low. not too bad though. went to dentist Tues. and i need two crowns for $1000 each, yikes!! thank goodness i have ins that will cover it all. the worst part is the thought of a needle in the front part of my mouth. the dentist called me in an "i don't care" pill to take before my appointment time so I hope that helps me. i'm truly considering having it done w/o being numb. i truly am petrified of the needle, literally!! i hope your teeth stop deteriorating. it is sad that our teeth take such a big hit :0( take care Patty. YOu look very good and healthy.
God bless you,
dj
Good bloodwork dj! It seems we all are low in the Vit D area! I long for summer, as this NYC winter as been brutal! Glad you have insurance, and getting the teeth done. Awwww, take the pill, close your eyes, and the needle will be ovber in a minute. They also numb the area they are injecting. After all you have been through dj???? Com'on! Put on those big girl panties, you got this! Thank you, I am trying to get there - health wise. Love your pic! Lol! Let me know how you make out!
Love & Prayers,
Patty
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Hi Deb!D Lewis said:Wow, same symptoms here
Hi Patty
Now you REALLY have my attention. I have an appointment tomorrow to see a neurologist, because I still have symptoms consistent with peripheral neuropathy. L'Hermittes Sign is mostly gone for me, although I do still get a bit of a twinge when I look down. My twinges, numbness and pains are in my shoulders, arms and hands rather than feet. I'll be five years out in May. Interesting that the new oncologist at my cancer center, after hearing my symptoms, told me that he wanted to send me to a Rheumatologist. I have no pain, and I don't suffer from inflammation, so I have been questioning his diagnosis of Rheumatoid Arthritis. I will read up on the syndrome you describe, and wait to hear back.
Deb
Yes, I have everything you have described. I did not get my results yet, but he put me on prednisone for 1 week, and it has been a great week! I felt like my old self again, and actually did not nap all week! I spoke with him yesterday, and he feels it is an auto-immune disease. I will try a different medication starting today, because you cannot stay on prednisone (10mg) for any length of time. It was wonderful to actually, do laundry, clean house, and feel normal with out the exhaustion! I pray they can find answers for you Deb, and I will be waiting to hear. I just want answers, no matter what the diagnosis is! At least they can treat it IF they know what it is. Prayers for answers!!!!
Patty
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Hi Hawk!hawk711 said:Hi Patty
This recovery process even after 5 years is a pain! You sure look healthy though! Keep up that positive spirit...Glad to hear from you.
Best
Steve
Yes Hawk, I got it all going on! LOL! The prednisone was great, and I am sure I gained a few more pounds, as it also increases the appetite. I was grazing every hour! I was just happy to be a part of life again, even for a week! I did take Friday off to lounge around, as the med made me so energetic, I had to tell myself to stop. My atrophied muscles felt the work out. Good to be up and about. Praying the new med is less powerful, but does the trick. Thanks Hawk. Always is my prayers. Sure wish I could get to Florida for some vitamin D and surprise Skiffin. Wouldn't THAT be funny!
Patty
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Hi!Noellesmom said:tired
Patty, I always know I'm going to have an RA flare because I become exhausted. Will be interesting to know about your blood work. Hundreds of types of arthritis and Sjogren's is one.
However, Jim is 5 years out from diagnosis and successful treatment and he has some very tired days.
I will get my blood work on Monday. As I posted the medication worked like a charm. Did your Doctor prescibe anything for you? I don't believe in having to suffer thru life, after all we have been thru. It is our time to thrive.
Prayers, Patty
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Patty
I seem to be more tired but I atribute it to my aging. However, I do exercise, I do sit ups, pull ups, and jog every day. My wife calls me for dinner, I sit up on the sofa, jog to the kitchen, and pull up a chair.
All kidding aside, I hope for the best.
Jeff
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