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If you can't be nice, be quiet.

I had a response to one of my posts today that really upset me. Someone accused me of being addicted to Percocet. On average I make a bottle of 90 pills last 4 months. Every few days I take 2 when my hip impingement or my sciatica flares up. Why such strong meds? I had back surgery 2 years ago. After the surgery we realized my hips are trash. I've got impingement, bursitis, rheumatoid arthritis, and osteoarthritis on both sides of my hips. The hip specialist refuses to do reparative surgery claims I'm too young. I can hardly walk without my meds. But I don't take them every day. Sometimes I can barely get out of bed to go to the bathroom.

Before you judge someone ask to learn. Or just go away.

11 reactions 7 comments

hEDS and 27 other things

Hello all, I'm not new to The Mighty but I don't post very often and I'm trying to teach myself to reach out more to people who understand how weird it is to be a zebra in a world full of lions....So here goes.... I've had the typical issues that plague EDS sufferers basically my whole life and like so many of you, I didn't know what was wrong with me until I was 43 yrs old (I'm turning 47 on May 3). I have an extensive list of diagnosis (EDS, fibromyalgia, chronic hives, degenerative disc disease, osteoarthritis, bursitis, bipolar, depression, anxiety, panic disorder, etc). I've been battling to get disability since 2019 and just filed again last week. Fingers crossed cuz I'm so over the whole being destitute thing lol. Anyway, I've learned that my pain level sits at a 7 out of 10 on really good days and a 20 out of 10 on bad days, I've come to terms with the fact that I'm evidently going to be exhausted all day, every day for the rest of my life, and I've accepted the plethora of braces and mobility helpers I have to use. I've also accepted that nobody REALLY understands what I'm going through and that I will forever deal with people who say stupid and hurtful things to me, albeit with good intentions. What I'm currently having the hardest time with is the medications they have me on (I've tried soooooo many). None of them touch my pain or seem to effect my depression or anxiety but I'll tell you what they do accomplish...they are excellent at helping me gain weight!! Coupled with my lack of movement, I have gained 60lbs in the last year!!! I've never been a skinny little thing but I wasn't big like this! The only exercise I can currently tolerate is swimming and I don't have access to that right now! It doesn't help that food is my favorite coping mechanism aside from sleep! I just don't know what to do to stop from gaining! My food intake doesn't appear to have any cadence on how much I'm gaining. I've tried diet pills and they did nothing. It's really starting to get to me. My self esteem is already low due to my incapability to do the things I want to do and used to do but this getting fatter and fatter is sending me into a tail spin! Thankfully I have a FANTASTIC support system in my life, one which I doubt I'd be here without, but I wanted to get some advice from my fellow zebras....is anyone else dealing with this issue also? If so, let me know! Thank you everyone for reading along with my giant rant...I appreciate you all!

9 reactions 6 comments

I'm new here!

Hi, my name is Stillhangingon77. I'm here because i suffer from chronic pain its going on 4 years now. DDD in my neck and back,piriformis syndrome, osteoarthritis in spine ect.,bilateral hip bursitis, ischial impingment, left hip labrum tear, severe neck and shoulder and arm pain,facet arthritis, arthritis in feet and hand and wrists.and now more symptoms that I have to go back to the orthopedic to see what's wrong with my elbow and shoulder. Also lumbar radiculopathy and cervical radiculopathy.

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My poor hips

My hips really hurt. I've got impingement, bursitis, osteoarthritis, and bone spurs on both sides. The mile I walked today did a number on my hips. I took 2 percocet and I am laying down. I already took my olanzapine. I should be feeling better by the time I fall asleep.

I just wish the surgeon would quit the ageism bullshit and fix my hips. If I'm not too young for pain then I shouldn't be too young for treatment.

My PCP is furious. He doesn't want to keep prescribing more opioids but it's the only thing that helps.


5 reactions 3 comments

remembering to be well

My story -

I grew up in the 80s/90s where being “double-jointed” was just a weird quirk/party trick. Well, the women on both sides of my family were affected pretty hard by the hypermobility.

I was 12 when I had my first ever dislocation (and first signs of POTS). It was summer and my house was unairconditioned in Texas. I was helping my mom with dishes when I started to feel slightly dizzy, so I held onto the counter-top.

When I woke up after fainting, half of the dishes were broken on the floor around me, my mom was crying, trying to wake me up, and my elbow hurt. I was taken to my PCP, who had no idea what was wrong with me, but took xrays of my elbow and suggested that I drink more water.

And so, began my relationship with different doctors – specialists, primary care, whoever I needed to see, I would. But, besides being anemic, dizzy/prone to fainting, and hypermobile joints, no doctor had any clue what was going on with me.

Flash forward to age 28(no, really, 28), when I’m working for an established optometrist, he noted that I hyperextended my knees when I was standing tin place; he recommended that I see a rheumatologist/cardiologist because his wife and 2 children had vascular EDS(which if you know ANYTHING about EDS, you do not want vascular EDS).

So, I went to their specialists and was diagnosed with hEDS, POTS, Ankylosing Spondylitis, bursitis and inflammatory arthritis – after years (as in 10 years without any sort of diagnosis) of bloodwork, CT scans, MRIs, etc. My doctors then placed me on a host of medications, including a TNF inhibitor, which essentially made my immune system go bye bye – which my doctor elected to begin 2 weeks prior to the big shutdowns due to covid in March 2020.

When covid began, we had a host of friends that didn’t take things too seriously with restrictions, but understood that we(my partner and I) had to because of my new health findings. We didn’t have to worry about going to the stores because of grocery delivery options and restaurant delivery and our friends at that time would also bring by dinners, etc, since we couldn’t go out. But, empathy fatigue is real. After about 2 months, our “friends” started going back out again(Texas did not take covid seriously, at all) and we were kind of left behind.

I still have no immune system, cannot go to concerts, clubs, etc – which is starting to weigh heavily on my partner, who loves interacting with other humans. But those "friends" are all gone now and the loneliness of

My life looks completely different than I thought it would at this point in my life – I was an avid roller coaster enthusiast, but I know that this part of my life is behind me, along with most exercise, and my sex life (what sex life?!) – but I’m pushing through and trying to make the best of my life as it stands right now.#AnkylosingSpondylitis #Bursitis #ChronicPain #Depression #EhlersDanlos #JointHypermobilitySyndrome

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Grieving for myself #Fibromyalgia

I am just trying to figure out where I'm going to go from here. I am so angry at the fibromyalgia that's all of a sudden in my life I just got the diagnosis a year ago and it was a 10-year battle to get that and it is really really hurt my life because I cannot exercise very much because on top of the fibromyalgia I have some massive arthritis and that makes it impossible for me to do the normal things I used to do and I just want the old me back but I know I can never be okay again because I will always have fibro in my life and it's so sucks. I just want to have one day where I don't hurt. The rheumatologist found major issues with arthritis on top of fibromyalgia. I have arthritis in every bone of my body the joint and my shoulder my right shoulder is being destroyed by tendonitis bursitis and arthritis so I just I'm here in name only physically I'm not here and mentally I'm starting to be but I'm not quite where I need to be at

22 reactions 13 comments

Living with Lupus

Hi! I am new here, but I am not new to chronic illness or Lupus. I was diagnosed with Lupus in 2018 after having a DVT in my leg which broke apart and formed 2 PEs in my lung. During the hospitalization, my doctors discovered that I have the Lupus anticoagulant. I was referred to the Duke University Lupus Clinic because of my extremely complicated myriad health issues. I found a rheumatologist whom I absolutely love there! She is very knowledgeable, supportive, and extremely caring.

At Duke, they usually don't put "Lupus" as a medical diagnosis. My actual diagnosis from their clinic is "unspecified connective tissue disorder." I asked why they did this, and she said that insurance companies cover more tests, medications, referrals, and procedures with this diagnosis than with a Lupus diagnosis. Who knew!

Over the last 5 years, I have had a labral tear (twice) in the left hip (once before and once after surgery to repair it), 2 sections of AVN in the same hip which led to a full hip replacement at the age of 40, atherosclerosis, renal artery stenosis, chronic bursitis and tendonitis in the same hip, both osteo and rheumatoid arthritis (hand, both SI joints, left hip), cataract in my left eye, Sjogren's Syndrome, hypothyroidism (most likely Hashimoto's), oral and nasal sores, anemia, depression, chronic pain syndrome, pleurisy which led to the beginnings of Shrinking Lung syndrome, protein and blood in my urine, a malar rash, a horrible rash after sun and heat exposure, chronic daily migraine, a positive ANA, deconstruction of vaginal architecture, overactive Bladder, chronic fatigue syndrome, Fibromyalgia, tons of chemical sensitivities, horrible anaphylactic allergies, and IBS-C. I also just found out that my cholesterol is high even though I have been vegetarian for 16 years.

I have been steadily gaining weight for the last year due to depression. So, in February, I was given the go-ahead to start a vegan diet. I was horribly sick from digestive issues and a tyramine-induced migraine for the next 3 weeks. Then in March, I realized that I was in the throws of a stress-induced Lupus flare. I am lucky that this is the first complete flare I have had. I have had infection after infection (UTI, systemic yeast infection, bacterial infection --all several times), clinical Exhaustion, increased pain and inflammation, and a constant rash. I am too tired to prep my vegan meals, so I am indulging in DoorDash a lot more than I should. In an attempt to regain control over my flare, I decided to start a chronic illness health journal. Hopefully, I can predict (or at least recognize) when a flare is imminent.

I really hope that I can help others navigate this process and offer support to those living with Lupus.

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A tale of 2 hips

Both my hips are really messed up. I've got #Bursitis , #Osteoarthritis , bone spurs in the joints, and #hipimpingement all on both sides. The surgeon won't do anything for me because he says that I'm too young. So the only relief I get is from Percocet and rest.
My PCP decided to go ahead and do cortisone injections on both sides since the surgeon is not helping me. I'm having it done tomorrow. He did injections in November but it only lasted 3 weeks. We figure might as well try again.

2 reactions 1 comment