ok here goes, last nov I had some re-tests done (complete pulmonary function tests, spiral chest ct scan) well the first time in 2009 when I had this stuff done, they basically uncovered the auto immune stuff, this time they have uncovered a small hiatal hernia (which might be small, but I can tell you since ive gained weight, ugh I get horrible stomach pain that actually wakes me up at night, that if I take a bunch of really deep breaths over the course of about 10 minutes will go away. how the hell does a small hiatal hernia hurt so flipping bad? im nauseas all the time too. then been having bad shoulder pain as well, cant raise my arms hurts so damn bad, only to find out from the ct scan that uncovered the hiatal hernia, it also shown something called gleohumeral arthritis in both arms, then the other day a chest xray that has uncovered more arthritis in my right shoulder where it all comes together, plus a fatty liver to boot. im really frustrated on so many levels, im not sure I can deal with much more, oh and they also found in the chest xray bone spurs in my thorasic spine, not enough ive had a lumbar fusion and bone spurs removed from my cervical spine, now the thorasic is involved to. I hurt so bad, I just cant take anymore, im tired of this and im at a point where im ready to give up and say to hell with it all. plus since they took out the biggest part of my thyroid last jan 2014 ive gained 3 lbs but no one seems to be concerned about that, and I know the added weight is what is causing me so much pain. im sorry im whining, I know I am and I know there are a lot more out there that has it 100xs worse, im just so fed up with this stuff, so tired of this struggle. I never dreamed I would get to this point. my daughter says im a hot mess, my sons and my x look at me like I have 3 heads, they pretty much don't believe im in the pain im in and that theres all this stuff going on..... :( :( :( if anyone has any ideas PLEASE I beg of you to share....I know I need water aerobics that might help, but I also need stretching excersizes, but with this damn lumbar fusion im limited, if anyone knows of a website, ive looked and cant find a lot......oh I was taking fish oil vit e and vit d but they seemed to make my stomach thing worse. its like I do one thing to help which makes something else go haywire, IM LOST BIGTIME
I eat oats and love them, seeds on the other hand don’t love my gut…your right, this is just a phase and it will pass as it always does, it just gets tiring over and over and over, as I know everyone here goes thru. I’ve tried the Metamucil fibre things their actually kinda good. Thanks again la…
Wendy, I am sorry you are struggling right now. Is your thyroid still being monitored? Keep advocating with your doctors and keep a symptoms journal of the symptoms you are having and watch for triggers, as well as things that make you feel better. Keep us posted, okay?
Hello. I read your post and just felt your pain. It’s so awful what you’re going through. I’m in a similar position but not as bad. I’ve got bowel issues too (I had it early on in DM too but I thibk / hope this is different). The pain is awful. Through the night too. I take peppermint oil. Helps a little. I also have osteoarthritis in my shoulder (in sure it’s from the high dose steroids). Anyway it’s f&£@c£&@g painful (excuse my language). I Got a steroid shot and that helped a bit. Enough to allow me to start exercises to try and get some movement back ad it was stiffening up. I see a Physio for them - can you? If not I can go through the exercises I do but the physio stressed that it’s inpirtant that the swelling (causing the pain) was reduced before exercising, hence the steroid shot. The trouble is with acute conditions you have to have full blown medical intervention as gentle stuff like oils etc don’t seem to be able to handle it.
Let me know if this makes sense and if you need me to describe the exercises I do. They have definateky helped with movement.
Good luck with it all
I feel your pain Wendy. Last month I had to be rushed to the ER because I collapsed. Doctors pretty much told my wife I should not be alive. I lost 10 pints of blood and everything in me was failing. It took a gastroenterologist to figure out I had bleeding ulcers on my esophagus. I also have a hernia. I spent a week in the ccu and am now on different meds to reduce the stomach acid in my system. My next trip is the cardiologist since my heart races like s train and I have difficulty catching my breath. You are not alone. I actually asked the doctors in the hospital to let me die but they said no.
Hi, Wendy--So sorry for what you're going through. My primary care doc took me off Fish Oil, as he said that, despite what the label claims, unless its by prescription, it contains mercury--bad for your liver!
Your sheer number of symptoms seems nearly overwhelming, but each can be addressed. Hope you have life interests that provide some escape. Remember that you are more than the trials with which you deal.
People care. Please find the strength to hang in.
Warm wishes, Nell
thanks nell, your right, and yes i do have things that help me escape if only temporary. hey have you done the bridge thing yet? if so how did it go and how did your energy hold up? as far as all that is wrong with me, the treatment for some is contraindicated for others, its a challenge. as far as fish oil, my allergist is the one who put me on it, he gave me the name of the oil he used and assured me it was safe, but to not buy just any brand because of the mercury issues. the differences in drs, right? it has made a huge difference in my cholesterol, and since I cant take statins, im kinda stuck on that. but thanks. I appreciate the support
wow Robert, hang in there my friend, sounds as though things might be worse for you, im sorry for all your going thru....
Robert said:
I feel your pain Wendy. Last month I had to be rushed to the ER because I collapsed. Doctors pretty much told my wife I should not be alive. I lost 10 pints of blood and everything in me was failing. It took a gastroenterologist to figure out I had bleeding ulcers on my esophagus. I also have a hernia. I spent a week in the ccu and am now on different meds to reduce the stomach acid in my system. My next trip is the cardiologist since my heart races like s train and I have difficulty catching my breath. You are not alone. I actually asked the doctors in the hospital to let me die but they said no.
my thyroid is being monitored, im very symptomatic for hypo but my numbers dont show it so he wont up my doseage, ugh I halfway wish he would to see if I feel better, but......
dancermom said:
Wendy, I am sorry you are struggling right now. Is your thyroid still being monitored? Keep advocating with your doctors and keep a symptoms journal of the symptoms you are having and watch for triggers, as well as things that make you feel better. Keep us posted, okay?
Wendy,
My own mom once told me (after asking how I was feeling) that there were people with worse problems than mine....That stung and you know what, your problems are bad because they are happening to you and honestly, you have a lot going on my friend....
I was taking two different water exercise classes, warm for people with arthritis and regular just for fitness....sometime the regular was a bit much, the warm water really made me feel better after a few weeks. Not saying it's for everybody, but if it's available near you maybe you can try it.
Hoping you get relief very soon!
Goodness Robert - how scary. I am glad that you're still here with us :-)
Robert said:
I feel your pain Wendy. Last month I had to be rushed to the ER because I collapsed. Doctors pretty much told my wife I should not be alive. I lost 10 pints of blood and everything in me was failing. It took a gastroenterologist to figure out I had bleeding ulcers on my esophagus. I also have a hernia. I spent a week in the ccu and am now on different meds to reduce the stomach acid in my system. My next trip is the cardiologist since my heart races like s train and I have difficulty catching my breath. You are not alone. I actually asked the doctors in the hospital to let me die but they said no.
That's awful Nichole! My counselor reminds me often (when I'm feeling guilty wanting to complain) that even though other people are experiencing things that you might consider worse, that is their own journey and you are entitled to your own feelings, your own pain, your own life. It's not fair to compare your own struggles to anyone else's.
On the other note - my doctors are always recommending water therapy or exercise in an arthritis pool that is warm. I just can't find a pool/class near me that works with my schedule or I'd be there!
M
Nichole Smith said:
Wendy,
My own mom once told me (after asking how I was feeling) that there were people with worse problems than mine....That stung and you know what, your problems are bad because they are happening to you and honestly, you have a lot going on my friend....
I was taking two different water exercise classes, warm for people with arthritis and regular just for fitness....sometime the regular was a bit much, the warm water really made me feel better after a few weeks. Not saying it's for everybody, but if it's available near you maybe you can try it.
Hoping you get relief very soon!
Hey Nicole
I took water classes before for my back they helped so much, ive been looking into them again the only problem now is both of my shoulders are bad, I cant even get a regular bra hooked and up where it belongs anymore so im no0t sure how im going to get into my bathing suit, so that's another challenge I face, but I do remember that warm water and as much as I hated changing in a locker room, I did it because it felt sooooooo wonderful. I know without a doubt the warm water would help my shoulders as well as my whole body to feel better, so im going to try to figure it out. my insurance plan has silver sneakers coverage, so if I can find a center that excepts that and theres a warm water pool, im oing to attempt it. hope all is well with you.
Maren,
thanks t you too, it helps even tho I know im whining that theres a soft shoulder here that validates how I feel. I know theres lots others who have it worse, its just sometimes its gets to be too much for me to bear then I blow off steam....im so thankful I have everyone here who understands, because everyone here has experienced a lot of the same. everytime we welcome a new member, I just think, wow this is the best place for support. its how I truly feel. and I thank everyone for listening and being here
Robert,
so glad your still amoung the living, I have a theory, as im sure a lot share this, we are put here for a reason, each and everyone of us, your included in that. your illnesses, like the rest of us are teaching drs a lot, and yes we all struggle each and every day, but who knows, if my drs can learn from me and save my children or my grandbabies from the struggles ive suffered then I say bring it on. (im back to feeling stronger as you can see). I have my low moments about everytime I go to the dr and they find more wrong, but I bounce back, because I have too. so there is a reason for you, just hang in there , better days are ahead
Maren Holzinger said:
Goodness Robert - how scary. I am glad that you're still here with us :-)
Robert said:I feel your pain Wendy. Last month I had to be rushed to the ER because I collapsed. Doctors pretty much told my wife I should not be alive. I lost 10 pints of blood and everything in me was failing. It took a gastroenterologist to figure out I had bleeding ulcers on my esophagus. I also have a hernia. I spent a week in the ccu and am now on different meds to reduce the stomach acid in my system. My next trip is the cardiologist since my heart races like s train and I have difficulty catching my breath. You are not alone. I actually asked the doctors in the hospital to let me die but they said no.
I’m glad to hear your insurance covers silver sneakers, we have that at our Y too. I’m also having shoulder problems, I bought 3 pull over bras but it still hurts to pull them on and off. My Rheumy thinks it’s tendinitis but hasn’t given me any options. It probably is because before I was even sick I had a small case in one shoulder.
I hope you can get back in the warm water!!!
wendy krauss said:
Hey Nicole
I took water classes before for my back they helped so much, ive been looking into them again the only problem now is both of my shoulders are bad, I cant even get a regular bra hooked and up where it belongs anymore so im no0t sure how im going to get into my bathing suit, so that’s another challenge I face, but I do remember that warm water and as much as I hated changing in a locker room, I did it because it felt sooooooo wonderful. I know without a doubt the warm water would help my shoulders as well as my whole body to feel better, so im going to try to figure it out. my insurance plan has silver sneakers coverage, so if I can find a center that excepts that and theres a warm water pool, im oing to attempt it. hope all is well with you.
Maren,
thanks t you too, it helps even tho I know im whining that theres a soft shoulder here that validates how I feel. I know theres lots others who have it worse, its just sometimes its gets to be too much for me to bear then I blow off steam…im so thankful I have everyone here who understands, because everyone here has experienced a lot of the same. everytime we welcome a new member, I just think, wow this is the best place for support. its how I truly feel. and I thank everyone for listening and being here
My shoulders unfortunately are because of arthritis and rotator cuff issues. Apparently my right should is worse than my left, but my left hurts a lot worse. I got the pull over/ pull-up kind and yes I have issues too. Hurts like hell to raise them. But I think the warm water will help I just need to figure out what type of a bathing suit I can get on because of my shoulders. Oh well guess I’ll figure it out… Good luck to you nicole
Wendy--Wondering whether you've tried the bras that hook in front? They're the only type I'm able to use. Also, would you be willing to share (perhaps e-mail) the brand of your fish oil? As soon as having to discontinue hormone replacement medication (Prempro), my cholesterol numbers got bad. Its so complicated how treatments interact with other functions--sometimes for good, sometimes for awful.
Take good care, Nell
Hi Nell. Yes I've tried them, and yes I think they would work if I could find one that is comfortable. Actually I'm sure they would.