View Full Version : Tired of it!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!
07-22-2009, 03:51 PM
I have felt absolutetly horrid, last 8 months, everytime I think I am starting to feel better!Boom! I am back below square one! I am sooooo tired of feeling like ****!:no: I really have to make myself move anymore. I hurt so much every where, and feel like total crud! I am sorry I am gripping,but thats way i feel! Hugs to u kathy:hissyfit:
07-22-2009, 03:58 PM
Kathy i wish we all lived nearer..id be right round now to hug you gently.I know you've had it tough lately.One day it will ease,even if just for a day..then more hopefully.Just try and rest allot where you can and know we all care about our little beauty.Keep posting here,we will always support you.I just wish i could take the pain away for you.Have you let the doctor just how bad you feel?
Love n hugs
07-22-2009, 04:08 PM
Its been very hard not to just stop all meds and just lay here! I think all the meds have made me feel worse! (if thats possible) I have felt even worse last few days the only change is Generic cellcept instead of name brand. coincidence? I dont know. I started valerian root last night to see if it helps with the no sleep. I have been taking 4 tylenol pms, anight for 3 hours of sleep, and it still doesnt make me tired, and does zilch for arthritis. I am glad every1 is so wondeful here. God bless each one u! Hugs Kathy:embarrassed:
07-22-2009, 04:30 PM
You need to call your doctor or see him.I suffer with insomnia,it can be heart breaking.I dont take the same meds,so im not sure what to advice.Except please keep fighting as bad as you feel right now.You will one day feel better.I think it does take time to start working ,the meds, i think.But you need help n advice from your doctor and soon.
Love n hugs
07-22-2009, 06:25 PM
thank u amanda! u r an angel. hugs back kathy
07-22-2009, 08:12 PM
Gentle hugs to you. I am sorry to hear that you are feeling flarey right now. I don't have any answers for you but wanted you to know I was thinking of you.
07-22-2009, 08:53 PM
You need to find a way to get some sleep..can you get a prescribed sleep aid. Lunesta is great...
Once you get your sleep under control I think you will be able to get your pain under control..
Do you have any prescribed pain pills? Nothing stronger than Tylenol 3?
Any other drugs you take that could cause insomnia? If so, could you take it earlier in the day?
07-22-2009, 08:58 PM
Awwwww, Kat Im sorry to hear that your not feeling well, I hope you start feeling better really soon. Im sending you 3 mega hugs:yes:
I hope feel better
07-23-2009, 06:46 AM
I agree with O get some sleep no matter how, this will help with the pain control. It will get better hang in there and keep ur head up!:cute:
07-23-2009, 08:46 AM
Hi Kat I am Kasey. I was diagnosed a year and a half ago with Lupus. I have many other diagnosis as well. The ones that come along side lupus. I was in bed for 17 months with a six week reprieve last summer.
I am so sorry that you are dealing with this. All of us at one time or another have been there. This is a safe place to gripe (however none of us will say you are griping, you are just sharing how you feel) We all get the pain and frustration because we have all been thru it also. Do you have a diagnosis? A rheumy? I know that I didnt start to feel better until my rheumy put me on plaquenil and imurin. Even then it took me several months.
Feel free to share all you need to. Dont hold it in as that will make it all the worse.
Kathy i am so sorry you feel like crap. this stinks we all at one time or another feel the same way you do. i was in bed for three months at one time with this. my poor sister had to come and clean my house for me. no one else would.
if you need to vent call me if you have the energy.
i always keep you in my thoughts and i will add u to the list dean and i prayer for at night. try to keep up your strength.
Call the Doctor ASAP.
sending you a great loose hug so it won't hurt.
07-23-2009, 02:54 PM
I love you guys! Thank u soo much for every kind understanding word! I had adverse effect to valerian root! Slept 30minutes! So, I made my hubby take my 4 kids to my moms, and I am going to take it easy and rest, no sleep does play a major role in this diseases progress very very true! Hugs to u all and agin luv ya!:cute:
07-24-2009, 01:39 PM
It is entirely possible that all the meds you are taking could make you feel worse. I think that almost every prescription med has side effect/s. Please don't stop taking your meds though. My Dr. works with me and I trial and error with prescription meds so that he finds ones that I can take with the fewest side effects. Currently, I take about five prescription meds daily. I have about three more that I don't take everyday.
Try to keep your chin up, Katroach. I know it is hard. I too struggle everyday with pain. Some days are a nightmare. I don't know what I would do without my pain med. It really helps me to function. Otherwise, I would lay in bed all day and suffer.
07-24-2009, 02:05 PM
Hope you feel better soon. I have you in my prayers.
07-24-2009, 03:54 PM
Sorry to hear you're going through this. I know it's frustrating we've all been there and we are all here for you now. :hug: Hope you feel better soon!
07-24-2009, 04:45 PM
Hope you feel better soon! Lots of hugs and prayers your way!
07-24-2009, 08:13 PM
Hey Kathy -
The insomnia is a trap, isn't it??? No sleep because you hurt, then you only hurt more because you can't sleep! AAAAAARGH. I am so sorry you are suffering. Definitely check into something to help you get some rest. Your body cannot work on healing if you are not rested and well-nourished.
Sending you hugs and prayers,
07-24-2009, 09:22 PM
I wish I could come over and hug you too. I am not familiar with your meds but i do know at one time some of the meds i was on cost me sleep and made my headaches much worse. I had this one migraine med that didn't mix well with my other meds and it was the worst insomnia I ever had. I would be so tired but couldn't sleep. I felt like I was going to go insane.
I'm praying you get back to sleeping better along with no pain in your life. ((((hugs))))
07-25-2009, 03:52 PM
I am on Prednisone 20mgs,generic cellcept2000mgs,prozac,two bp meds,nexium, and lodine,also have vicoden 4 pain, it does nothing for the arthritis, or my constant migrane! Thanks for all of your support! You are each precious to me!and i really believe i'd have gave up long ago with out u all! Hugs sweet friends:embarrassed:
07-25-2009, 09:48 PM
I am so sorry to hear that you are having such a difficult time. Having Lupus has been very difficult to deal with. It is really hard being sick but with all your sickness and frustration make sure you communicate your needs to your doctor. It is important that you have one that listens to you. I see you have been taking 4 Tylenol PM at night and that is too much. Tylenol is metabolized in your liver so you need to make sure you don't take more than prescribed to take. A lot of our Lupus medications can be toxic to the liver too so be really careful of the dosages that you take because you don't want to cause liver damage. I hope you feel better soon.
07-25-2009, 10:42 PM
Thinking about you.
07-26-2009, 02:25 PM
thank u Ayah, it means alot!hugs Kathy
07-27-2009, 01:08 PM
Kathy, what all has been tried for your pain so far?
I can only recall the ones I remembered to write down and if i hadn't I doubt I could recall...although sometimes i know i haven't always remembered to write things down.
I'm still going through finding something that will work on the pain that my GI system will allow me to take. I'm researching medications and then suggesting them to my doctors.
I've gotten so desperate that I took two of my migraine med for control, and although it did help somewhat, I couldn't sleep at all and wow did it give my kidneys a work out. Then I spent a week "busy" despite my ibs meds trying to help with that problem. Ugh!
It so sucks when you're still looking for something to help you live a more normal life and the wait keeps on getting longer. I am sure we're gonna find something Kathy...it's just a matter of hanging in there till the time comes. How are you today sweetie?
07-27-2009, 04:03 PM
Sorry things have been so bad for you. I haven't been sleeping either. I'm so tired. I'm trying to set a bedtime but still don't go to bed. Hope things get better soon. I been wondering how you've been.
07-27-2009, 04:31 PM
Thanks Becky and abbagirl! I have tried vicoden,ultram,tylenol3,lodine,and thats it i think. It does nothing for my joint,connective tissue pain. It helps me feel a little better fluey wise for about 25minutes or so. Hope u all have a great evening. i know i will feel better in joints when the lupus moves to it next attack area! i can map the places its been in last 8months! It was in cns and brain for 5months, made lesions, and usual cns junk!, then it stopped and attacked my ribcage connective tissue, then when that finally stopped it started on my hands, and now it mostly toes feet,ankles, knees, some hands also. I am on cellcept, which stopped cns attack, but i guess it doesnt do anything for joints. Hugs kathy
07-27-2009, 08:38 PM
just want to join everyone in wishing you a night of peaceful sleep. I know you must hate to see you family go, but hopefully you are getting lots rest.
hang in there girl, you (unfortunately) know how to ride out the flare....sendig you feathers to lie on.
07-28-2009, 11:09 AM
Thank u Phyllis,ur a saint! I feel decent today, my toe joints didnt hurt lastnight! So maybe its moving on! I hope! lol Hugs Sweet friend
07-28-2009, 11:17 AM
Always thinking of you and sending you gentle love n hugs.
07-28-2009, 02:11 PM
Thank u my sweet amanda!! hugs back to you sweetie! kathy
07-28-2009, 09:36 PM
KATHY...LOL...your new avatar is so cute.
Alright, I've jotted all those meds down and I'm on it!
07-28-2009, 09:51 PM
Could you tell me in what order you started taking these meds?
You were miserable before you started them, so it makes me wonder if it's just the wrong meds. Have you tried to go without any of them and see what happens? Did you feel worse? The same?
I'm wondering if this is some neuropathic pain...there are specific treatments for that. Lots of them. I don't know, as steroids can help with some neuropathies. Not all.
Prozac can be used to help with that kind of pain but may not be helping you. How long have you been taking it now?
You said you had brain lesions...it's attacked your cns before...so maybe that's connected to the pain you're feeling and you're just not getting the right treatment/s.
So many what ifs involved. But I'm wondering if this is neuropathic. Not all pain meds are equally helpful. Did you feel better than you do now before you started the pain meds...in pain but not this miserable? I went through something like that and it helped me narrow down some answers.
07-29-2009, 03:39 PM
Oh sweet Kathy!!! Im so sorry for your pain and discomfort! YOU are ALWAYS in my HEART and in my THOUGHTS sweet and sexy cherokee mama:cute:
07-29-2009, 03:45 PM
I don't think I saw this when it was first posted...
Kathy I am so sorry you feel this way...Hugs and love...Hugs and love and LOTS OF cool breezes as I know it is hotter than hot in TX during the summer. Like I told you before I am always here to vent to...I am one of your biggest cheerleaders and will vent, be angry, laugh, smile with you so if need be send me a private message...
I hope the pain subsides and you find relief sooner rather than later!
Wishing you love, health, and remission!
07-29-2009, 06:01 PM
Thank you sweetheart! Ur an angel! I am actually okay today, i even laughed a time or two! Haha three now! Even though it was because i lost my balence and shoved a corner of the fork drawer in my shoulder!lol it made the other placeS stop hurting for a while! hugs sweet friend and thanx again! Ditto to u sister! Hugs KAthy
07-29-2009, 06:11 PM
Im thinking of you n glad you laughed and i too did at your post thing....can i buy that parachute:) so funny.xxxxxx
07-29-2009, 07:26 PM
3 bucks and a ice cold soda and the chutes yours! Must warn you! Works best for inlaws, and exs!not my friends! Lol
07-29-2009, 08:40 PM
Kathy.....please forgive me for not coming to this thread more often to support you. I have been struggling with terrible brain fog and having a hard time keeping up with things. Sometimes the words just won't come out right.
I always come here to this thread and read when there's updates, so I can keep up with how you are doing.
Please know that I am very, very sorry that you're struggling with so many challenges and so much misery right now. Sending you extra gentle...sweet...and 'filled with kindness', HUGS my friend :hug:
I truly hope that you and your doctors can sort things out and get you on the right track with all of this. Don't give up hope for a better tomorrow.....it surely must be right around the corner for you. :yup::yup:
07-30-2009, 02:47 PM
Thanx Lori! ur a jewel! I also want you to know, even if i am hurting etc.. i will always be here for u 2 sweetie! Hugs i am sorry about brain fog!ugh! i had that like 6months solid was horrible! now its most joints hurting. :skeptical: owell! lol hugs to u ! Kathy
07-30-2009, 07:57 PM
i agree, the parachute sounds perfect for exes, but mine is not worth the $3.00 purchase price....so i guess angel wins the prize.
hope you are feeling better today, your struggles just keep lining up and following each other....you deserve a break, and i hope it is around the corner.
i know drs. don't like to prescribe it, but i have tried all of the pain meds that you mentioned, and Dilaudid is absolutely the only thing that gives me relief when the pain is unbearable. I have to be aware of any addiction concerns, but i have been on it now for about 10 years, and i do not overuse or abuse it.
I especially don't want to misuse Dilaudid because i don't want my dr. to quit prescribing it. She closely monitors my refills, and she is agrees that i am being careful and responsible.
You might want to ask your dr. about trying dilaudid for those really bad times. It is a controlled medication, and I have to go to the drs. office to pick up the script....there are no refills. I also had to sign a waiver stating that i would not get scripts for dilaudid from another dr. I did not mind signing this at all......i understand the repocussion ( oh crap, i can not remember how to spell this word) of abusing this drug.
hope someone can walk you to the path of being pain free.
07-31-2009, 11:09 AM
Kathy I hope you are having a good day and feeling better!
07-31-2009, 02:08 PM
Thanks sweeties! Ur both great! I never tried dilaudid b4. My rhuem wont prescribe those meds, because every1 was abusing it when he did! So that sux 4 every1 that just want relieve a hour or two a day!! I have never abused meds! I hate taking anything! I just now made my self take pain meds, because i hurt so much! I hope u continue with sucess on ur pain med sweetie! I wish we didnt have to take anything, but i have found thats a pipe dream!(4 now) my prozac is just now kicking in, so now even though i hurt 24/7 i can act silly, and make jokes about it! lol Hugs to u both Kathy ps. I will give u the parachute 4 free! lol
08-01-2009, 06:21 PM
Thumbs up to the prozac Kathy!!!! YOur spirits will be lifted now my friend!!!! LOL WOO HOO to that!:thumbs-up:
08-02-2009, 02:20 PM
hey kathy girl,
how is the prozac working for you today? hope you are laughing at the pain....the vision of this brings a smile to my face.....
08-02-2009, 06:02 PM
I may see if i can increase the prozac,20mgs seems like a low dose. I am not laughing today : (! I am soo tired of the pain! gets old! I know u know what i mean! Hugs sweet friends! Lov ya Kathy
08-02-2009, 06:42 PM
OMG Kathy, 20 mgs IS a LOW dose. I would work on getting that UPD my friend!!! YOU need some SMILES and thats NOT going to HELP accomplish THAT!!! SHOOT, my 14yr old son is on 30mgs! Up it baby up it!!!! LOL I DO HOPE for BETTER days for you hun. Sending you HUGS XXXXXXXX
08-04-2009, 11:26 AM
Thanx my sweet jeanette! i will ask aug 21st about prozac increase. hugs kathy
08-04-2009, 02:04 PM
Yes, please DO Kathy cuz it WILL make a difference!!!!:yes: Thinking of YOU and sending you gentle hugs!! XXXXXXXXXXXX
08-04-2009, 07:13 PM
I take 40 mg of prozaz !!! It makes me have fun most of the time. But having lots of problems right now. Not having much fun right now. But would hate to see what I would be like without it.
08-05-2009, 06:33 PM
Sorry BECKY, the Prozac not working right now. i am so ready to be happy and pain free! I 4got how either feels anymore!ugh! Hugs kathy
08-07-2009, 01:47 PM
AWWWW, so SORRY my dear Kathy! Im THINKING of you SEXY CHEROKEE MAMA!!!! I hope you can get a GOOD balance of your moods SOON DEAR FRIEND!! HUGS xxxxxxxxxxxxxxxxx:cute:
08-09-2009, 05:29 PM
I would be in better mood if my dang joints would stop hurting! I am so tired of pain! and now i got costochondritis again!! ugh!! Ok I am dumb ill quit complaining 4 now! lol Hope every1 else is doing good! hugs kathy
08-10-2009, 03:44 AM
Oh my beautiful friend ,
You never complain you tell u how you feel so thats good cause then we can empathise or just listen which helps you.
I hope soon you begin to ease.I too have sore joints and my head n jaw throbbing to my heart beat.But we are all here for you always...so you keep posting!!!
Love n gentle hugs
08-10-2009, 12:31 PM
I second Amanda's post... that is not complaining sweetie.
I've been doing some digging and haven't found many answers. Just about everything you're taking has a side effect of pain being possible. It's such a mess we're in. Can't tell if it's the disease/s or the medications causing things and it's hard to peg what is causing what so often. (((((Hugs)))) If the rheumy won't help with the pain meds, will your pcp?
Costochondritis is so awful! I'm praying for you Kathy.
08-10-2009, 02:12 PM
Thank u! u two are sweet hearts! I am glad i have u all! Hugs to u both!
08-10-2009, 02:16 PM
And we are glad we have you ...hang in there beauty!!
08-10-2009, 07:10 PM
Thank u sweet Amanda, ur a angel on earth! Hugs Kathy
08-10-2009, 09:05 PM
sorry that i am just now getting in here,,,,,what is happening girl? I just can't believe that they have not been able to get you some relief.....it really pisses me off at this damned disease when i see how much you continue to hurt.....it is time for you to get a break.
i am sending you tons of feather soft pillows to gently position around your aching body....aaaahhhh, oh so soft.
wishing you a night of peaceful sleep.
08-11-2009, 02:50 PM
...and to add to the pillows I'm sending you lots of chocolates.
08-11-2009, 02:54 PM
someone mention chocolates?:valentine2: :) xxxx
08-11-2009, 06:14 PM
Kathy hang in there my dear! I hope you are feeling better today!
08-12-2009, 11:35 AM
Hey Kathy....how are you?
I'm bringing in plenty more chocolates for everyone.... lol...Amanda, you crack me up.
08-12-2009, 12:37 PM
AWWW, me DEAR Kathy i am THINKING of you hun!!!! :cute: Hows the meds coming?
08-12-2009, 12:56 PM
still on same dose of prozac. i see rheum 21st he prescribed it so he'll have to change it. My joints are still hurting, and getting more deformed each week. i am thinking about asking for Enbrel or another type or rhuematoid shot. hugs to all u sweet ladies! luv ya all kathy
08-12-2009, 01:13 PM
Sorry Kathy that you are still hurting! I hope that you get some relief with you next rhumey visit!
08-12-2009, 01:21 PM
Yes Kathy, me too,hope they sort your meds out so your pain eases soon.
08-12-2009, 01:45 PM
AWWWWWW!!!! So sorry Kathy!:no: Just remember, WE LOVE YOU , deformed or not!!!!!! WE can ALL be deformed together!!! :yes:
08-12-2009, 01:51 PM
So sorry you're still in pain sweetie. Oh the 21st seems so far away. (((((Hugs)))))
08-13-2009, 05:29 PM
Thank u Abbasgirl,Luckey7,ButterflyRN,angel! U ladies are priceless! I have jury duty monday! I am trying to get out of it, i dont feel good!! I dont want to have to sit there thru a trial!! ugh! Hugs again luv ya friends
08-13-2009, 06:23 PM
oh great, kathy,
sitting on jury duty is all that you need.....surely you will be able to get out of it,,,,but sometimes our judicial system makes no sense.
hang in there girl,,,,21st is next week....not too far away now.
08-17-2009, 07:07 PM
I told judge today, i was on immune suppressive therapy, and he said well ur only around 12 jurors! I said well a cold could be bad for me! He let me go home! thank God. As soon as i got home, my Dr calls said where do i fax this the excuse for jury exemption to? haha kinda late! I sat by 200 people half were coughing up lungs!lol hope i stay well! 21st is almost here i cant wait so i can see what to do arthritis wise! Hugs luv every1 kathy
08-17-2009, 07:20 PM
hooray for kathy.....you talked the judge into showing some compassion....you are the winner today.
yes, 21st is close....i will keep my fingers crossed that dr. can help you.
08-18-2009, 03:47 AM
Goodluck for the 21st and hope today is a better day for you.Be firm and to the point at the appointment,make the doc hear you..we will be with you in spirit,if you get an itch its me giving you courage :) Thinking of you.Hey i too was called up for jury service the begging of the year and i didnt go as i had my lock jaw,fab excuse!!
08-20-2009, 09:35 AM
How did I miss this news???? :shocked:
Oh Kathy...so glad you got out of jury duty!!!! I got one of those letters a while back and I went into panic mode big time! It was from the county we had just moved from so I was so relieved I didn't have to be there. A phone call was all it took.
So glad it's almost time to visit the doc!
Wow, there are a lot of us with appointments this week and next. I'm hoping and praying we all get to visit doctors in a caring mood that HELP US! (((((Hugs)))) Kathy, I've missed you!
08-21-2009, 07:36 PM
I seen my rhuem today, he stopped Cellcept, and restarted Methetextrate, in shot form. I ll give it to myself starting tomorrow. The pill form helped me alot, but made me nauseated and have diarehea!!:nah:I got relieve joint wise with it last time....so maybe the shot form will advert the gastric sideeffects! I am the lucky 1% that lose hair while on Methtex. so i may cut it shorter to get some weight off of it!! I need some weight off some where!!lol:yes:I was also prescribed Ambien, i dont have it yet, but hope it helps! HUGS TO ALL LUV EVERY1!!Kathy
08-22-2009, 07:10 AM
Oh Kathy,sorry about your hair but hopefully it will grow back,mine did and ive read other members did too. So glad your joints are easing,but the sickness i understand,thats me right now.Hopefully soon you will feel even better .Just rest and know we all care.
08-22-2009, 10:45 AM
Thanx Amanda! ur a doll! hugs I am fixen to give myself my shot. have a great day. I hope u feel better 2 sweetie! Kathy
08-23-2009, 06:54 AM
Hope all continues to go well for you and the shots are working!
08-23-2009, 09:34 AM
How was the shot?? Did you cut your hair? How are you feeling today?
Peace and Blessings
08-24-2009, 10:51 AM
Hi Kathy...was thinking of you Friday and wondered how the appt. with the doc went. Is the Ambien and methotrexate helping?
08-25-2009, 11:20 AM
The shot gave me usual nausea, diarehea, i actually feel a little better without cellcept! go figure! haha. Ambien helps a little thank God! Thank u ladies for ur support ur all wonderful. I havent got haircut yet. Hard to spend money on myself, except for all my RXS! lol I do need it bad. HUGS KAthy
08-25-2009, 03:10 PM
Hey i cut my own fringe the other day...if you look at me with your head on the side it does look straight :) I made a mess but i dont care lol.x
08-27-2009, 11:20 AM
Kathy, sorry the med gave you those symptoms sweetie. Has that subsided?
So glad you feel better... so thankful!
I think I'll ask my doc about ambien tomorrow.
08-27-2009, 01:18 PM
I am okay with sideffects! lol I have got used to crappy feeling by now! (pardon my french) I am glad to ambien it helps me get more restful 2 hours!haha!! thanx again my sweet angels for ur contining encouragement! i lov u all hugs Kathy
08-28-2009, 02:32 PM
Ive been MIA Kathy so i am sorry you are still having some issues my friend:no: You are on my mind hun!!!!!!!! Get on those meds to PEP your MOOD!!!!!!!!!! WOO HOO to that!!!!! PEPPY MEDS!!!!!!! :yes:
08-29-2009, 02:57 PM
So the ambien only helps you rest more but not that much?
I tried to ask my pcp about trying it for myself, but she wouldn't hear me out for some reason. I think she was having a bad day.
08-29-2009, 06:57 PM
Yup im a weirdo! haha Ambien usually works for others. I am excited even if it 2 hours, becuase they are restful. luv ya ! kathy
08-30-2009, 07:29 AM
I need Ambien :) This is going on my list when i see the rheumi again.I asked for plaquinil he said ...nope i dont think this will help you...DOH i have severe fatigue n in pain..how can it not help me? Still dont understand it.
Thinking of you Kathy.