Community Voices

has anyone taken blood thinners, speciafically lovonox for avascular necrosis or osteonecrosis? what was your experience any positive results?

I’ve been taking a full therapeutic dose by injection everyday for 7 months and do not feel it has made any difference but do not know how long to keep trying since my hemotologist said it’s up to me how long. the studies have been done for 30 -90 days until more recent studies have gone 3-6 months. it is supposed to stop the progression of the avn if it is in stages 1 or 2 and maybe help with symptoms of more advanced stages of disease but also depends on the underlying cause of the avn. if you have any experience with this I would love to hear about it.
#Osteonecrosis #AvascularNecrosis #AVN

Community Voices

starting avn dialogue

I’m not new to avn I’ve been diagnosed since 2009 and I have so many questions about it still and many experiences to share as well I’d love to start some dialogue about #AvascularNecrosis
I have experience with the shoulder hips knees and ankles. I’ve had 7 joint replacements 4 of them during the pandemic and 2 decompression surgeries. I’ve had unusual complications after 4 of them including 2 blood transfusions and I’m wondering if others have had the need for blood transfusions after joint replacements due to avn.
I’m new to hand/wrist and. elbow avn and would like to know more about others with the upper extremity avn.
I look forward to hearing from others with #AvascularNecrosis and I have many more questions. #

Community Voices

So been told I have #Avasculor Necrosis in BOTH WRISTS....anyone else have this??

10 people are talking about this
Community Voices

Almost Helpless But Not Hopeless;
My Story In A Very Large Nutshell:

Hi folks. I've been here for a few whiles but haven't posted. This is what's going on now...I live in bed.
I have no furniture but my bed. I have no room for furniture; my old couch broke and as my things are all in boxes and have been moved around, messed with, spilled and repacked, etc since I was in the hospital in April, I can only dream of another one. I can't fix this mess alone. I have no willing friends and no money to pay someone if I knew who to pay, if any service is even available during the pandemic. My bf is depressed as well and has done this to our apt. Empty 2 litres everywhere. Paper garbage crumpled and on the floor. Dishes that rarely get done; plates are non existent. Where did they go!? I try to pick up but there's only so much I can do. He and my grown son who lives w me blame me for all this. Yes, it may be my stuff but it USED to be organized. I've got photos! I suffer from arthritis/chronic pain. Pain in my shoulder my Dr says is bursitis along w the arthritis, and I broke my knee badly in April and it's very painful altho I do my PT exercises daily. I already was disabled from arthritis in my hip (hip replacement didn't stop its progression) when I got my same leg rolled up on by an elderly lady's car in a parking lot in 2012. Her tire snapped my tib/fib in half. As a result of all this, I have nerve and tissue damage and a ton of titanium in my left leg! I can't get up from the floor, much less get down to it in the first place so sitting there is impossible. My car is full of crap pulled out of our storage and left there since May. It has a dead battery and the jump kit I bought I'm afraid to use in the rain and the rain won't stop. These are not excuses, these are realities. What do I do? I feel trapped. I live with pathways from here to there. I've never lived like this. Depression and anxiety are good friends of mine and I don't sleep much. I have pulsitile tinnitus that's very loud. I'm not suicidal or anything although I do feel helpless. I'm in the planning stages of taking a shower, that's difficult as well, and I bought vitamins and face cream last week to help with self care. I'm SICK of people saying "baby steps!" "Just breeeeathe!" Neonatal steps are more like it, and we know neonates are in the womb and can't fend for themselves, "breathe" or "walk." I can't figure this out at all. It's overwhelming. So that's my life right now. My son is good to me, goes to the store, picks up my Rxs for me and cooks for me too bc he loves to cook, but he's bipolar and has severe anger issues he's working on. It's counter productive to mention the mess to him, he just gets angry and stomps off and shuts my door. Talking to him beyond that point fuels his fire and he has worked so hard to get even this far that I'm not willing to bring it up with him. Bf is another book!!
Thanks for listening...

5 people are talking about this
Community Voices

Quit my job 🤗

I have been battling with the fact that I can’t handle working anymore. I finally did it this past Monday and, while very sad on the one hand, on the other hand I also feel an incredible sense of relief. The struggle of pretending I was ok enough to hold down a job was making all of my symptoms worse. The stress of feeling like a disappointment as an employee is suddenly gone. I can focus on me, which is what I should’ve been doing anyway. I’ve been making all of my decisions based on money. Money stress isn’t new, so hopefully if I feel better, life in general will be better. We always manage to pay the bills. I feel genuinely happy for the first time in awhile. #Undiagnosed #exhausted #Insomnia #ChronicPain #MaybeFibromyalgia

6 people are talking about this
Community Voices

IBS, Nerve pain - can’t take amitriptyline due to side effects

Anyone have a recommendation as to what to take that helps both - IBS-D and bad nerve pain? Amitriptyline used to help me have a life, but I can no longer take it due to urinary retention. Now I feel like I am chained either to my toilet or to my bed and ice cold gel packs. I am to the point where sometimes I have a ten second heads up before I am hit with severe urgent diarrhea (no gallbladder anymore either making it worse!) and on top of that, my degenerative disc disease and arthritis makes it hard to move at all (arms, legs, neck). There are times when I can barely move my arm making it extra difficult to take care of myself. I am not a candidate for surgery, (been there, done that and the best clinic in my state said there was nothing to operate on right now) shots don’t work and can’t take ibuprofen and the nsaids I have to take OTC because of stomach pain. It’s a nightmare folks! If you know of any medication that helps, please leave a comment. #IrritableBowelSyndromeIBS #DegenerativeDiscDisease #ChronicPain

3 people are talking about this
Community Voices

What symptom has been “quietest” for you lately?

<p>What symptom has been “quietest” for you lately?</p>
191 people are talking about this
Community Voices

Out of Sorts

I woke up with a migraine but then started to feel better (migraine-wise) and then I got hit with this emotional wave of deep sadness. Now I have no desire to do anything that I planned on doing and just want to lay in my room, alone in silence. I hate feeling this way and I don’t understand how one minute I’m feeling okay and the next I’m unmotivated, sad, and exhausted. There are many parts of myself that are good but this emotional roller coaster crap really stinks and I hate myself for feeling this way. I feel like I’ve ruined my day and I also feel really stupid for feeling the way I do.


5 people are talking about this
Community Voices
Community Voices

How does the fall weather impact you and your condition?

<p>How does the fall weather impact you and your condition?</p>
31 people are talking about this