hi everyone, im so wore out and tired right now its getting harder and harder to have long days im almost ready to go to bed for the night it aint even 8 30 pm yet omg this stinks. doc doesnt have answers yet but 2 years ago my r.a. test came back negative , i didnt know he ran the test then but he ran it again today, he also told me he is now looking at possible lupus and ran a blood work for that and a few other autoimmune diseases i see him again in a month for further testing , he also ran a blood test for inflamation type diseases today too now im really starting to get worried cuz my hands r cold as heck and he did agree with the e.r. doc that i do have secondary raynauds i showed him the papers and no sooner i stepped on the cold docs office floor my toes turned white and tingly so that has been confirmed but secondary means there is a major underlying issue that doc hasnt been able to pinpoint yet. i will keep u all updated all i know is im hurting really bad right now im tired very tired and weak all my joints hurt, my back hurts and i seriously cant hardly keep my eyes open im officially starting to get scared on this im not sure exactly what lupus is or what the joint disorder doc is now looking at unless lupus affects all joints idk doc gave me some info and sites to look it up but from what i heard about lupus it can be hell to deal with and cause fibro which leads to raynauds. i will let u all know what the tests show.
I hope everything turns out ok. I know it is hard to but maybe go to a happy place and not think about it for a little while as it is probably not making your pain any better. I believe there may be a lupus group on here and I know there is raynaud's group as well that might help you. I hope you find out what is going on. It is scary and annoying when our docs don't know what is going on with us and can't give us any answers. I hope he has answers for you soon. Hang in there I am sure they will know shortly what is going on to give you peice of mind with an answer.
Did they check you for low thyroid?
Dear River,
Glad you made it through the day, I know this is all exhausting, but you are getting somewhere. I know this is exceedingly long over due, but it is finally happening. Remember fibro and Lupus are so much alike in symptoms and both are known as 'the great imitators', so it takes time and incredible skill to differential them. A Rheumatologist is anything but hasty to start you on Lupus drugs until he is as certain as he can be that you have it.
I also belong to BF Lupus site and know of several ladies who had been given a firm diagnosis and started on the drugs, only for the Rheumatologists to rediagnose them, sometimes many years later, with fibro.
Vasodilator drugs can be given for Raynaud's, secondary Raynaud's is termed the Phenomenon. This is what I have, and have probably always had it, I have always responded poorly to cold exposure, with my fingers and toes going white, if not slightly purple. L-Kitty found the best website with all kinds of special gloves and socks designed and made for us, people with Raynaud's.
We're all here for you, anytime you would like to talk about this. So glad that you are getting somewhere!
Love and hugs,
SK
SK this is such great advice for River…
I agree it’s so hard to really differentiate between Lupus & Fibro,
I also have Raynauds, have had it for years before fibro,
It’s really making me wonder, if the fibro was always there and then like you said a switch was turned on… With infection, virus, stress
River, hang in there all these tests are good to r/o other things, I think you have a good dr. If he is willing to continue to check for things
Hugs & blessings
dee
i hope you get some answer soon waiting is always the worst part and its ashame we have to suffer for a long time befor anything shows oris taken seriouse. glad you have a ood rhemo seems he cares. take care i will look for your update.
ty DLP with everything going on i havent had much chance to get on here lately to talk about things and yup it is frustrating but atleast i have a doc who has done so much more digging than some of the others i have had, also i see him in a month he is setting me up with a pain doc and some type of specialist he didnt say what type yet i think he is waiting for results to tell me what kind of specialist i need but im guessing it will be a rhumatologist. I will check out the raynauds group idk if i should check out lupus just yet being that he only did the blood work today on that im very nervous about that being my r.a. test 2 years ago was negative it really gets the brain thinking.
they did a thyroid test a couple months ago he said its slightly enlarged but levels r normal Wiseowl
thanks sk :) with the nerve damage from my car wreck and work injury where 3/4 of my spine was hyper extended my doc did say fibro is number 1 on his list so he is gonna leave it at that until we get more answers he wants to dig as much into this as he can cuz my mom was adopted we know nothing about her side of the family and my mom is having alot of the same issues as me doc wants to see her too to compare notes but its possible its genetic being for many years i didnt live with my mom and the issues r almost identical and im glad im finally getting answers too i just wish they werent answers that stress me out cuz ironically its messing with my pain lol cant win for losing on this one right now but i didnt pick my name for nothing once its figured out i can say i survived it and atleast will have answers as to how to control it a bit better or manage it either way works for me i just dont like the waiting game soon as he said he was running a lupus test my mind started spinning and we dont even have all the answers yet its pretty nerve racking
thanks dee and yup he is the first doc to run in depth tests to find answers i saw his credentials he graduated from john hopkins top 5 of his class im not willing to give him up if i dont have too lol
i dont have a rhumatoid doc yet , the doc doing all the testing is just my family doc :). he wants answers too so he knows which direction to point me in , he is gonna set me up with a pain doc and any other specialist i might need im under docs orders to stay close to home lol
Sounds like you have a good doctor there who is looking at all possibilities to rule out other things. I’m sure your exhaustion is both physical and emotional so you need to rest. Will be praying for you and hope you get some sleep. hugs~ Sandi
hi sandi and ty yup im sure its both i been busy between the funerals this past couple months, tests, pain, cold, sinus infection, trying to deal with loss of 2 people really close to me my adopted dad and a good frined who was like a sister to me its been rough nothing much i can do except go with the flow for awhile and yup im still wore out my back hurts, feet hurt, and i have a headache tonight im normally not home on weds nights im usually mingling pain and all with friends and doing karaoke but im too tired and sore and didnt think it safe to drive tonight
Someone said something to me on here the other day and it sure holds true - " Be SELFISH to YOURSELF." I think this is a perfect time for you to be selfish and heal that tired body and soul of yours. I am so sorry for your loss - it is always tough. The stress doesn’t help ones pain. hugs~ Sandi
ty sandi and yup i always tell my friends that sometimes i cant help them if i dont help myself first so the last few days i been staying home getting rid of fevers and sinus infection and dealing with aches and pains from the bad weather getting ready to set in. i miss my friends i normally sing with them a few times a week but this week is really rough and i know if i dont take it easy for a few days or so that it will be even longer before i can see them again so im just kicking back and taking a few days for me and my kitty :)
Good for you! I’m sure your sinus infection has zapped your energy AND your voice. I am the worst kareoke singer…you know, the one everyone wants off stage! I wish I could sing, but my career could only be as a way, way backup singer! Get some rest. ~ hugs~ Sandi
ty sandi and im doing better now jsut struggling a bit with the raynaud's and some pain but i been able to go back to singing but even that wears me out but its only for a few hours a couple days a week i was going stir crazy on bedrest the my computer bit the dust i had to get this new one and lol still getting familiar with it so i hadnt been on many sites until now, i still have a slight sinus infection but its getting better i just wish my hands and feet would stay warm but doc says stress can set me into a fribro and raynaud's flare and i had been under alot of that lately stress that is but mostly im staying home relaxing with a couple nights here and there with friends to go singing even though im wore out at the end of the night its worth it to see them adn to get some fresh air and the minor walking back and forth from my chair to the microphone helps a bit too
Hey river! Good to hear from you! Rachel and I just had to get new computers, and windows 8 has been a real challenge for both of us, so we totally understand! Whew! I'm anything but a techie anyway!
I'm a bathtub baby, and find the best way to get the blood flowing and get my hands and feet warmed up is a hot bath!
Glad to hear you are singing! It's good for the soul! It's one of the best reasons to be tired that I can think of!
Sending you big hugs,
SK
hi sk now that im used to my computer the pain has been very intense with the bad weather im hanging in there and glad to be back and now that im used to it im loving windows 8 the fact that the start menu comes right up is very nice and it runs my games alot better and now that the internet company fixed my connection prob im finally ready to roll lol and loving windows 8 to boot but im not loving my pain it sucks