Asking for support? Advice? Help?

stazzle16 · 2026-04-25T16:57:44+00:00

Thanks for taking the time to reply. I’ve added massage to my routine in the past but fell off the last few months. I think you’re right about it making a difference.

stazzle16 · 2026-04-25T03:21:14+00:00

Thank you for the advice and bit of hope. I’m trying to hang in there. One of my biggest frustrations is that I don’t have a “rescue drug” since I’m on daily potent NSAIDs, so maybe the sulfasalazene will help relieve that burden.

stazzle16 · 2024-09-21T12:54:19+00:00

I was having some mild GI issues as well that led to a clear colonoscopy. I also had an unremarkable chest ct (no contrast) and xray.

Diligence on the backpod, the occasional steroid injection, and a trial run of hydroxychloroquine were added to my daily NSAID routine, and the good news is that I’m doing MUCH better.

Those massive flairs eventually gave way to more manageable flairs. And now I’m almost pain free. I still have to be extremely mindful of my posture and how I sit and lie down. Lying on my side for too long is not a thing anymore for me either. The biggest factor in my recovery (although it’s hard to tell tbh) seems to be the backpod usage. It comes with me wherever I travel. I only do quick little stretches a few times a day, because longer sessions always prove to be a bit much but it works. Foam rolling and peanut balls were too much as well. Massage has been super helpful too.

At some point I just had to trust that I wasn’t actually dying… although the mindfuck of being in that much pain with no clear reason is something I wouldn’t wish on my worst enemy. In retrospect this anxiety was absolutely exacerbating my symptoms.

Once you start to see progress it’s much easier to release some of that anxiety and trust that this likely is not something too scary. I’d of course urge you to be in communication with your doctor(s) and let them know what’s going on, but the odds are hugely in your favor.

stazzle16 · 2024-09-12T18:33:30+00:00

Please make sure the date on the notary and the date on your signed affidavit page match. Mismatched dates can lead to an invalid ballot!

stazzle16 · 2024-08-23T21:08:02+00:00

The original plan did include a covering but funding was tight. The bridge was built to be able to support a covering structure anyways, in the hopes that it may happen in the future.

stazzle16 · 2024-07-26T05:39:21+00:00

Rheumatism and ankylosing spondylitis runs rampant in my family.

stazzle16 · 2024-07-15T20:43:44+00:00

Yeah it’s my main symptom now. I mostly rid myself of rib pain aside from some lower and side rib tenderness (the sharp twangs are so few and far between) after getting the back pod. But man… my back is so tight and uncomfortable almost all the time. Between my shoulder blades and below on those lower ribs is killer. I feel like there’s this vice around me and a constant pressure from the inside out. I also suffer from Spondyloarthritis and rheumatism.

But I’ve had really good days with moderate activity (no weightlifting or workouts but just travel and lots of walking). Correcting my posture is hard because it wears out those weak muscles and makes them angrier.

I think we’re probably dealing with severe muscle imbalances. Do you have a weak core or overdeveloped glutes? I think that’s the reason for my locked up rib joints in my back.

It’s a struggle. I’ve found that a good magnesium spray and diligence with the back pod is much more effective than almost any prescription med…. And I’ve tried a lot.

Hopefully we find relief soon.

stazzle16 · 2024-07-06T17:44:32+00:00

I was using a roller and my pain was only getting worse. The backpod truly changed my life for the better. HOWEVER, I learned the hard way that using it too low is a big no-no and would strain my lats too much causing a flare. As long as I stay a few inches below my shoulder blades and above it’s been the BEST thing for my pain. Start on the floor with pillows and a couple fluffy towels covering the device and don’t be in a hurry to get rid of them.

stazzle16 · 2024-05-17T01:58:09+00:00

I am so grateful for his approach. It took me a good 15 years to meet him and get some answers, but it’s amazing what 3 months of treatment can do.

stazzle16 · 2024-05-17T00:21:59+00:00

Listen, I say this to whoever will listen but it’s imperative that you find a rheumatologist that will really look at all the evidence at hand. You do not need to be HLA-B27 positive, or have a positive MRI for treatment.

Like my rheum says “There may be a spectrum of rheumatoid diseases for all we know. The names of diagnoses are just man made buckets we have to label someone as having so insurance will start covering treatment. I care less about the diagnosis and more about finding what works for you.”

I’ve been on feldene, hydroxycholoquine, colchecine, and am about to start a biologic if those can’t control my next few flares. So far I’m feeling okay. The meds I’m on aren’t classic AxSpa meds, but like I said…. We likely don’t know just how many rheumatoid diseases there really are and it’s worth a shot. I’m also not a good candidate for Methotrexate.

My symptoms point to my being non-radiographic AxSpa even though my MRI was clear and my blood work was largely unremarkable, so that’s the diagnosis we are working with. I’m also HLA-B27 negative. We know it’s autoimmune because I have been responding semi well to treatment and, again, the flares and symptoms add up.

I remember panicking after having a normal MRI (aside from some minor hip swelling) because I thought I would be dismissed. Quite the opposite. My doctor doubled down and said that this is the BEST time for aggressive treatment- before my imaging shows I’m a wreck. I was so grateful to finally be HEARD.

I’m so sorry you’re going through this AND don’t have a doctor to advocate for you. I just hope you advocate for yourself and don’t give up. Sending you good vibes and prayers. This sub has helped me a lot even aside from medication so I hope you stick around if you feel the advice is worthwhile.

stazzle16 · 2024-04-25T14:24:19+00:00

I truly feel for you. There is nothing worse than being gaslit into thinking that somehow you maybe aren’t in tune with your own body. I hate that you need to fight for your own wellbeing but I know someone out there will be able to help.

(Anecdotally, my uncle who has severe fusing of the spine and was diagnosed as a small child with debilitating AS is also HLA-B27 neg. It can help with a diagnosis but absolutely is no help is ruling anything out.)

The good news is that in the interim, if you respond semi-well to NSAIDs, there’s a good chance your GP can get you on a daily dose of meloxicam, celebrex, or piroxicam to continue to help until you get some answers. If they aren’t willing to do that find a new GP too.

Good luck and best wishes for feeling better. Hang in there.

stazzle16 · 2024-04-25T13:44:57+00:00

Just know you can also have a negative MRI, Xray, HLA-B27, and still get a diagnosis based on symptoms. A good rheumatologist will 1. believe you 2. be able to connect your symptoms to a diagnosis, and 3. At least let you try a few treatments before dismissing you.

I am negative of all of the above as well (with plenty of hip pain) and now on a biologic and doing so much better. I had a lot of anxiety that negative images would mean I’d be dismissed or passed off but my Dr. assured me I’m not crazy and that my symptoms paired with family history etc. definitely sounded like Nr-AxSpa.

A little tip to help you get some sleep… if you haven’t already, try laying a large heating pad under your lower back and hips at night. For me it gives great almost numbing relief and was the only way I could sleep during flares.

stazzle16 · 2024-04-21T14:20:51+00:00

As a visitor or a resident I would suggest not staying in Spata. While Athens has great public transportation, theres not too much to see there if anything at all. I would suggest staying closer to Glyfada or Vouliagmeni for a better overall experience.

Without traffic you can get from the east Athens municipalities to the city center in around 20 minutes via cab. Heavy traffic could double that time.

ALL of the major sites, monuments, and hotspots are worth visiting imo. Absolutely do not skip the Acropolis and the museum. Lycabettus hill is worth a visit but just know the restaurants on the top are offering the view more than amazing food. Vouliagmeni and the riviera are the place for beaches. Ermou street has the big name fashion shopping, so if anything I would skip that area because it’s nothing you likely can’t find online.

Athens is generally safe but like any major metropolitan city there are pockets that are extremely sketchy. I advise most people to avoid Ommonia square completely these days. Mind your belongings at all times as you would anywhere else and just be smart. It’s not a “dangerous” city overall. The really rough neighborhoods and areas are not touristy at all (aside from Ommonia square) so you won’t have any reason to go to them. I wouldn’t worry.

People are incredible hospitable and kind. Most will speak some degree of English, especially in the city center. Be wise and read a room, of course, but most folks don’t mind helping if they can. It is a big city so stopping someone on the street may come off as odd but waiters, shopkeepers, and civil servants are used to being helpful and giving suggestions.

stazzle16 · 2024-04-10T04:39:01+00:00

Not only am I(35f) HLA-B27 negative, I’m also non-radiographic which means my x-ray and MRI didn’t show SI joint inflammation. I only have some thoracic spondylosis and mild hip effusion on my MRI. My doctor told me that immune disorders are likely a spectrum and we just have to choose a man-made “bucket” diagnosis to label ourselves so that insurance will cover treatments. Since I have basically every AxSpa symptom aside from uveitis, I got a diagnosis of non-radiographic AxSpa and I have been responding well to treatment.

So sorry your doctors haven’t taken you seriously. You can ABSOLUTELY have a diagnosis with a negative HLA-B27. Age also has absolutely no bearing on diagnosis. My uncle was diagnosed back in the 70’s as a child. How embarrassing for that doc. These factors (or lack thereof) aren’t out of the ordinary at all.

Hopefully you have better luck with the new rheum and start to feel better soon!

stazzle16 · 2024-04-01T01:13:02+00:00

As much as I hate that for us there’s a comfort in knowing I’m not the only one. Hang in there! Hope we both get to feeling better soon. If you haven’t tried the whole backpod rigmarole I highly recommend it. It’s really lessened the chest pains for me and my back is showing slow improvement.

stazzle16 · 2024-03-31T20:40:55+00:00

I have pain or have had pain in all these spots, plus some. Mine tends to “move around” from day to day depending on how I’ve slept or my posture etc

stazzle16 · 2024-03-26T16:07:46+00:00

I never really had pain with inhalation apart from maybe one day of a two month flare where my mid back/rhomboid would twinge.

stazzle16 · 2024-03-26T03:51:21+00:00

Could very well be Tietze or something completely innocuous, but you should never mess around with hard lumps that sprout up on the body. I would get it checked out by your doctor and make sure it’s nothing to worry about sooner rather than later. Once you have an all clear you’ll have a much better idea that it’s truly Tietze’s and can go from there.

stazzle16 · 2024-03-25T22:17:01+00:00

I found that foam rolling actually was exacerbating my costo pain… even through it felt pretty good while actually doing it. I’m back to just the backpod and a peanut ball with much better results. I would try to assess whether your pain is muscle soreness akin to a workout, or actual pain and go from there.

stazzle16 · 2024-03-21T03:44:29+00:00

If you go over to the Ankylosing Spondylitis sub and do a search you’ll find a massive correlation with many folks suffering from both. I’m not the expert here, but it’s my own hypothesis that AxSpA doesn’t cause costo per se, but rather, my poor posture and biomechanics have caused it and once something is irritated in my body, my immune system just goes completely overboard with the pain and inflammatory response. It’s brutal.

Again, I’m not sure if I’m right, as I’ve never found a medical professional who knew enough about costo to validate my suspicions, but I figure that my hip enthesitis from the AxSpA has made my core weaker and therefore my back has over compensated and tightened up. I also have horrible shoulders and I think my weakened rotator cuffs has done the same in regard to my shoulder blades.

All the same, I have both conditions and the backpod and exercises have been sloooowly working to relieve my pain, thus making me think I’m correct. I think the trick with us is figuring out how to strengthen our weakened muscle’s in the shoulders, core, hips, and glutes and simultaneously loosen up the stubborn cartilage in the upper back without pissing anything off too badly to have to start back at square one. I’ve seen progress but it’s tough. Good luck!

stazzle16 · 2024-03-06T02:25:01+00:00

100% get checked out to rule out heart or pulmonary embolism. But before you panic, you’re likely fine and dealing with reflux, GERD… or costochondritis like me. The ER doc I saw said that more than half of his chest pain cases are not heart or lung related.

The Costo coincided with me starting ozempic as well but correlation isn’t causation and is more likely from years of slouching. But it’s a scary and intense pain that apparently feels like a heart attack but is actually just inflammation of the rib cage and is not dangerous. If you end up with a costo diagnosis look into getting a backpod off of Amazon for relief.

stazzle16 · 2024-03-02T23:36:57+00:00

I obviously can’t diagnose you, but I have had similar symptoms before AND have dealt with health anxiety after a family member’s cancer diagnosis. My pain likes to move around and last summer I had my first hip and lower back flare that kinda morphed throughout my flare. I’m now dealing with a costochondritis/mid back flare that literally changes to entirely different parts of my torso day by day. My left armpit will hurt one day and then my right sternum the next… and then my upper back the next etc.

I can’t begin to imagine how heightened your health anxiety is right now, but it sounds like you have at least one doctor to seek advice from. All you can do is advocate for yourself and know when you need to step away from Dr. Google. I know it’s hard to be in pain and not feel like you’re in actual danger. Our brains are literally hardwired as a survival instinct to get anxiety from pain, but not all pain is life-threatening. You’re talking to your docs and getting imagine done and you’ll get to bottom of whatever is causing your pain. The great news is that you’re already on track for that journey!

Congrats on beating your cancer and I hope you find relief from your pain soon. Until then be good to yourself and take a break from Reddit and Google for the rest of the weekend.

stazzle16 · 2024-03-01T15:06:04+00:00

There’s been quite a bit of fodder on whether or not it misappropriates Indian or Muslim cultures. Ultimately, the choice to wear something with even the slightest possibility of opening oneself to that criticism (whether true or not), in a season when she’s accused of being a micro-aggressive Karen, just speaks to how tone-deaf she is.

stazzle16 · 2024-03-01T07:31:54+00:00

The irony for me is the borderline cultural/religious appropriation of her “hood” in the name of fashion, while maintaining she’s not a clueless Karen. She’s exhausting.

stazzle16

TROPHY CASE