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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

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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.

1 reaction 1 comment

I'm new here

I'm here to find hope and positivity on my worst days. I suffered with un-diagnosed fibromyalgia for years. Got diagnosed 10 or so years ago. Still deal with unbelieving health professionals. I've had back pain for 30 years and chronic hip bursitis for 15 years. I was over 60 when I had a 3 level lumbar fusion and more three years ago. Still suffering from the effects of 3 months of bed-rest at no more than 30 degrees. Got the okay to get out of bed. Then Covid lock-down so no PT. A car crash two years ago that herniated discs in my neck, re-injured my back and more. Had right shoulder surgery then left shoulder surgery. Then pneumonia last Thanksgiving. Still short of breath. I also have eye and digestive issues and chronic migraines.

Most of the time, I concentrate on the good things like the fact that I am independently mobile (even if I can't walk far), I can see with glasses, have good friends and an amazing husband. But I do have days were I just wonder why I survived that car crash. Days like today where the pain is unrelenting even with opioids. Members of the Mighty are so encouraging to each other and if my story helps someone feel better about their pain, we all will benefit.

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I am a pain patient not an addict

The blurred line between the two I guess is too broad of a space for doctors to understand I fall under pain patient.
Today my hips hurt to go from gas to break and to hold either but obviously less with gas. So I call my hip surgeon leave message, they call back, get more info put me on hold, talk to doctor, comes back says he believes this to be a fibromyalgia flare?????!!!!!! I said great thanks for your time she said to go to comcare crisis if this is a mental emergency ER if a medical emergency. Ok thanks bye.
I'm at my wits end with razor feeling inside my hips from bone spurs, tears, impengments, bone structure deformities (pitting in femur part of the hip joint, arthritis and bursitis. I know fibro flares and those don't include razor sensations inside the joint not anywhere else. But okay. A couple days ago the opportunity to self harm and next thing I know I've carved no point in forearm because my know it all 19 yr old is triggering me. I see no point to being here not necessarily to die, even if itd be nice not waking up in agony disappointed that I woke up. It's different than suicidal, convenience vs at own hand but there is a blurred broad line between those too.
So, I need to go to the ER for pain, but I have ace bandage on my wrist they gonna ask when and if the take vitals or put iv in if that's what they do. Then they going to immediately stop treating the thing that caused me to sh in fist place...and then commit me to the psych hospital where all they have is Tylenol and ibuprofen and naproxen no muscle relaxers which I had a Charley horse spasms, as I often do and in any muscle in my body even my face, yesternight, yesterday I am strained sprained and am in pain there as well my hips. Oh bonus bursitis in both shoulders they pop and grind and feel like razors too but haven't got them checked yet kinda need to walk, but also need to be able to use my hands and arms which when doing things after awhile my hands will cramp and once done I can't grip nothing like muscle too exhausted. So what job can I do? I can't even sit long before spasming & having to go lay down on my heating padsssss I have 2 lost my 3rd one somewhere I lay on two covering entire back and upper part of hips where also muscles there hurt cuz you guessed it spasms. Usually I drape the weighted one over my pelvis when I have the third to lay on...cuz this one has vibrating cilindars inside and not the comfiest to lay on and no I don't use vibration cuz I feel it spoils my muscles to where they require it more and more until all I do is get up to get drink and food and toilet...go back lay down on it. So stopped using it like that and now I'm worse than ever.
I'm getting a divorce soon as he too doesn't know what to do for me as does the Drs too they dont know what to do and if I come out and ask for pain meds I'll be a verified addict cuz that gap closes real quick if you specifically ask for certain meds.
I go to the ER they are for emergencies well I feel my pain is an emergency but they seem annoyed with me seeking care there, and reluctantly treat my spasms and pain sending a prescription just enough to get in to see doctor unless it's Friday then just enough until Monday and getting in that day is impossible. So I am told to go to minor ER, they can't treat pain there, so also go back to ER and rinse and repeat get enough pain meds until appointment if I'm lucky. So 20 for Dr and minor ER 150 for ER copay wise. Can't afford it. Convenient that we can't work things out and getting divorce for other obvious reasons I will into with the last medical turned out emergency, and trust me his dismissive attitude towards my medical care is horrifying I walked around with my c4 hairline fractured for a week and a day and thinking after he took kids to school he would take me to er nope he had laundry to do so I drove myself. Was admitted and he had the nerve to bring up his mom needing my car when I was explaining how dangerous and life threatening it was because of where it is located on the part that is a small hole where the vein to the brain flows through and it could have caused a stroke. I told him figure it out cuz I'm being admitted for a serious condition for once. They usually give me a shot of haldol and send me home. If you don't know what that is look up on YouTube the haldol shuffle that sums it up quite well.
So, add my 19 yr old and his condemning me for using my only source of relief 😮‍💨 I smoke pot. I can't justify paying the same price for the legal not as powerful so I have to smoke more of it to get relief which is also bad for my lungs which I had bronchitis still got my smokers cough I've had for years left and laryngitis is still strongly lost voice, but yelling over my 19 yr olds christian music and preaching videos, it's no wonder. He is what I like to call a toxic Christian his shove down your throat approach is not how I come to doing that Christian living that always brings up "test" if you make it through you got a "testament" how do you not make it through? Time marches on as if nothing happened and responsibilities remain the same the daily day to day task demands remain the same. So...make it through yeah...have a breakdown go into psych hospital....that's strong but now suddenly those supporters distance themselves because you required something they don't understand. And so the support system I thought and put down on my risk assessment and plan for dismissal, and now they suddenly are too busy for me...got the hint.
I'm just damned if I do damned if I don't and I don't know what to do anymore. I really need to go to Mayo clinic. I assure you once my pain is managed then ADHD is addressed and I can focus on tasks and get things done instead of being a bumblebee working a little on everything and have nothing at the end of the day to show for it another reason divorce why isn't the dishes done? Because kids needed this when I started to do them then I needed a break before tackling the dishes again. Then start again and either I see another need needing done or kids again. Then another neeing done discovered and also started...kids...kids...I'm utterly exhausted why? You didn't get the one thing I asked you to do done. Bite lip go to computer and bury myself I don't do confrontations at all.
My sister tells me to use my voice. But he has be making me feel lazy so it must be true spiral down father in depression.
Anyways lots of life happened had a HLHS and Turner's syndrome baby who lives 19 hrs and 34 mins, had 2/3rd of hybrid surgery done on her heart when she crashed when they had to put the measuring wire back in her heart they got her back took her back to the floor she crashed again but couldn't bring her back. My hubs was a tourist all the way there and all the way back dragging me along to St Louis arch on the way back after losing my baby and experiencing engorgement sure take her in public where crying babies are everywhere. I finally told him how it made me feel and he said maybe he should of left me in the car?! That's his solution?! Me who gets post partum bad, sure leave me in the car...see I should of left a long time ago cuz this was 2008...he could read my journals if he doubts my claims. Figured he was so couldn't understand how he was continuing to make me think more and more poorly of myself.
Get this, my now 19 yr old when in 1st grade told me I "would be living under a bridge if it weren't for" his dad. I'm like what?! Where did that come from? Did he come up with it on his own? I think it's more likely he over heard someone talking about me, so that doesn't sit well, and was added to the reel of stinkin thinkin I already have on repeat.
Farther and farther I buried myself in my PC. I would get haircuts he liked he would buy me clothes and help pick glasses. He says I'm overly dependent on him well he made me this way! He don't like what I pick never has never will. That's fine. I'm done. #stayingstrong

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I'm new here!

Hi, my name is Katherine Kane. I literally discovered the community about 60 seconds ago, so I'll hold off on announcing my intentions or plans. But I will volunteer that I've been working on a multi-media project about the intersection of chronic illness and the bureaucracy of being 'on benefits' or otherwise in need of public support systems.

#MightyTogether #Anxiety #Depression #Fibromyalgia #PTSD #ADHD #MyalgicEncephalomyelitis #Aphantasia #Bursitis #DiabetesType2 #PolycysticOvarySyndromePCOS #Arthritis

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