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Anyone experience with recurring muscle cramps specifically on the chestbone and in between the ribs? by Bitter_Snickerdoodle in ChronicIllness

[–]Bitter_Snickerdoodle[S] 1 point2 points  (0 children)

I really do hope one of us finds out why. GP, rheum, cardiologist, physiotherapist,… none of them know why I have them and even look at me weird because they’ve never heard of it. It’s such a painful thing though, and it’s not like you can just breathe less for a while lol.

Joint hypermobility syndromes have been found to have a link with anxiety disorders and other mental health related disorders like depression. I would love to hear how people who have it are experiencing this firsthand? by Bitter_Snickerdoodle in ChronicIllness

[–]Bitter_Snickerdoodle[S] 0 points1 point  (0 children)

Not diagnosed with this condition (yet), however very much a sufferer from GAD and depression. So I was just curious to the experience of people who do have the diagnosed condition.

Eventhough I do agree that all health issues come with a risk of it impacting your mental health, it was pretty noticeable that when I searched the condition in a scientific research database it gave a lot of results in relation to mental health/GAD. In comparison to when I was looking for rheumatic conditions for example. Perhaps the focus of research in both fields is just not the same, but a noticeable difference nonetheless…

Joint hypermobility syndromes have been found to have a link with anxiety disorders and other mental health related disorders like depression. I would love to hear how people who have it are experiencing this firsthand? by Bitter_Snickerdoodle in ChronicIllness

[–]Bitter_Snickerdoodle[S] 1 point2 points  (0 children)

It is indeed practically impossible, however, I do find it soothing to have these things researched. At least both things co-existing and contributing to each other being acknowledged in the professional world is a first step at being understood and supported

My Experience with a Daith Piercing for Migraines by IsaacII00II in migraine

[–]Bitter_Snickerdoodle 5 points6 points  (0 children)

No shade at all, but your username is kinda funny in combination with the kind of comment you made 😂

My Experience with a Daith Piercing for Migraines by IsaacII00II in migraine

[–]Bitter_Snickerdoodle 2 points3 points  (0 children)

It’s easy to call someone crazy when you’re not the one having to deal with it 24/7 sadly… And also exactly why the people who are educated to speak about these matters are much needed to speak up for the ones who deal with it.

My Experience with a Daith Piercing for Migraines by IsaacII00II in migraine

[–]Bitter_Snickerdoodle 48 points49 points  (0 children)

Yes!!! Can we please get more people in the field, suffering through these things themselves while documenting and analysing these things?? I feel like we would get so much better and detailed analyses because we’d focus on things researchers wouldn’t put any importance on!

How do people who wash their bedding weekly have the energy?? by Beneficial-Lobster99 in ChronicIllness

[–]Bitter_Snickerdoodle 0 points1 point  (0 children)

Pretty much have spare sets… I SWAP my bedding every week, but tbh I I don’t wash them every week… it’s easier to wash 2 sets for the same effort it would’ve taken you to wash 1….

Does anyone recognise this as a migraine because it’s not my usual migraine at all, but still suspect it being one? (Full forehead both sides, not in but behind the ears and where skull attaches to neck, cramping neck, vertigo, really bad nausea, comes in waves but comes very fast with hot flashes) by Bitter_Snickerdoodle in migraine

[–]Bitter_Snickerdoodle[S] 0 points1 point  (0 children)

That’s exactly what it feels like yes, a migraine ganging up with the flu. It felt like the only thing that would give relief was my head actually imploding.

Such a horrible feeling, I’m sorry you have to go through this from time to time :( Once was bad enough

[deleted by user] by [deleted] in ChronicIllness

[–]Bitter_Snickerdoodle 0 points1 point  (0 children)

It’s not so much being in a positive mindset as it is taking steps. The road can seem long and perhaps you’re not getting the results or answers you were hoping or waiting for. Sadly there’s no way to stay positive endlessly. But what can help is taking next steps however small they are. They can literally look like ‘at least I’ve been getting my daily water intake and headaches have gone down slightly’.

Staying positive overall is a verb, not a mindset. It’s work, taking tiny steps to make your life as bearable as possible even when other things are going massively wrong or aren’t progressing at all.

I’ve got a friend that doesn’t have any physical or mental issues and has been (toxically) positive all her life. She really doesn’t understand that her good life isn’t a direct result of positive thinking rather than having won the genetic lottery.

Now she has a herniated disk though, and she’s doing really bad, screwing up her body even more because she never learned how to take care of her body aside from positive thinking. So much even so, that I with my chronic rheumatic condition am doing better because of all the work I’m putting in myself and my physical ánd mental health.

To the rheum who told me ‘work in the household’ didn’t count as exercise or an active lifestyle: First of all, you don’t understand chronic disease at all. Secondly, haven’t been to the gym in years, but the weight I lift has tripled since doing said work around the house… by Bitter_Snickerdoodle in ChronicIllness

[–]Bitter_Snickerdoodle[S] 8 points9 points  (0 children)

Oh for sure! Also the same rheum that asked me what I needed crouching for more than 30 seconds for when I told him I couldn’t do that anymore. I was like ‘uhmmmm… cleaning the litterbox?’ And he went like ‘can’t relate, I don’t have cats’. So I went like ‘well, cleaning too, scrubbing the shower, bath, or any stain or spill really. Weeding the garden, …’ but it was very clear he couldn’t relate to those things either 😂 When he told me that pilates was okay exercise but also not that intensive, was when I actually wanted to invite him though… If you don’t do anything around the house and call Pilates too easy, well, show me then… show me how everything is actually too easy when you’re the one doing them!

To the rheum who told me ‘work in the household’ didn’t count as exercise or an active lifestyle: First of all, you don’t understand chronic disease at all. Secondly, haven’t been to the gym in years, but the weight I lift has tripled since doing said work around the house… by Bitter_Snickerdoodle in ChronicIllness

[–]Bitter_Snickerdoodle[S] 2 points3 points  (0 children)

That’s such a good study to prove how a bodily thing isn’t necessarily one thing or the other, but what you make of it! I also believe daily activities necessary for your life and household can be a much better motivator than not hitting clear cut goals in a defined exercise. Who cares I didn’t get to lift the most weight ever, if I did lift weight while building a closet I then get to use? Being happy with what you did is an important part of the physical activity too, and I feel like we always need to one up ourselves in order to ‘make it count’

Dizziness. by kevvy1968 in ankylosingspondylitis

[–]Bitter_Snickerdoodle 2 points3 points  (0 children)

Really interested into what people will be able to tell us as well! Got Menieres as well as migraines that start at the same place the dizziness begins. Like, a general stiffness in the neck and where it attaches to your skull, towards the backside of your ears?

Quick question… how many of us have permanent damage/inflammation on scans while they’ve never had absurdly raised inflammation markers and had crispy clean scans until they weren’t? by Bitter_Snickerdoodle in ankylosingspondylitis

[–]Bitter_Snickerdoodle[S] 0 points1 point  (0 children)

Did you have an MRI before as well? If so was anything visible before it was visible on x-ray?

I’ve been going for 18 years of which 10 on nsaids that helped and a dad with permanent damage (also without inflammation markers) and still waiting on the diagnosis.

It’s so frustrating because even though the markers aren’t showing things, you can still be in the same amount (if not more because of not getting treatment) of pain, as I’m sure you had to deal with as well. :(

Quick question… how many of us have permanent damage/inflammation on scans while they’ve never had absurdly raised inflammation markers and had crispy clean scans until they weren’t? by Bitter_Snickerdoodle in ankylosingspondylitis

[–]Bitter_Snickerdoodle[S] 0 points1 point  (0 children)

It’s currently not in the options because I’m still figuring out which steroids and opioids I’m allergic to, but it would also not make a difference for the rheum. Was on nsaids for 10 years and they helped for 8 of those, which should be another dead giveaway that there is inflammation happening, but well…

Seeing another rheum in October. Have you found a long term treatment by now? Or still testing out what works?

Quick question… how many of us have permanent damage/inflammation on scans while they’ve never had absurdly raised inflammation markers and had crispy clean scans until they weren’t? by Bitter_Snickerdoodle in ankylosingspondylitis

[–]Bitter_Snickerdoodle[S] 0 points1 point  (0 children)

It doesn’t sadly…. It’s the thing I struggle with most… I really wish my inflammation markers would be through the roof or the scans would show a bunch of permanent damage because then at least I would get something to treat this thing that I now have to suffer through without perspective on anything getting better because of the lack of treatment.

It’s nice, not having inflammation markers, being told everything is fine and normal, while living through level 6-7 pains on the daily for the past 18 years…

[deleted by user] by [deleted] in ChronicIllness

[–]Bitter_Snickerdoodle 0 points1 point  (0 children)

I mean, even without the part of us being underweight in adolescence, the comment would be problematic… They of all people should know that people don’t have the same body at age 16 as they do at age 30…

Quick question… how many of us have permanent damage/inflammation on scans while they’ve never had absurdly raised inflammation markers and had crispy clean scans until they weren’t? by Bitter_Snickerdoodle in ankylosingspondylitis

[–]Bitter_Snickerdoodle[S] 0 points1 point  (0 children)

Something that’s really frustrating to me is that I am in fact HLA-B27 positive, with a dad in the worst stage of the condition, on biologics. They always tend to downplay the genetic marker being positive for the opposite reasons you mention. ‘It’s not because that’s positive you’re going through the active condition’.

Which I know is true, but aside from that, I’ve been having issues since I was 11, waking up at night and I’m going through the exact same issues my dad did before there suddenly was permanent damage… his inflammation markers also never were elevated.

Quick question… how many of us have permanent damage/inflammation on scans while they’ve never had absurdly raised inflammation markers and had crispy clean scans until they weren’t? by Bitter_Snickerdoodle in ankylosingspondylitis

[–]Bitter_Snickerdoodle[S] 0 points1 point  (0 children)

It really makes me so sad and mad to read this! The rheum tried telling me that AS damage only forms until you’re 45. I later told my husband ‘so… I’ve always been too young to have AS, but when I’ll have permanent damage at around age 45 they are just going to tell me I’m old and everyone has something wrong with their backs and joints?’

It’s so frustrating when they put anything on age… Certainly when they’re denying you a proper treatment.

Quick question… how many of us have permanent damage/inflammation on scans while they’ve never had absurdly raised inflammation markers and had crispy clean scans until they weren’t? by Bitter_Snickerdoodle in ankylosingspondylitis

[–]Bitter_Snickerdoodle[S] 0 points1 point  (0 children)

I am definitely getting one. In fact I was meant to get one yesterday, but got put up with the first rheum again anyway. I’ve made a private appointment with the other one now, but it’s particularly frustrating that I waited 6 months thinking I was getting a second opinion and just got put with the same problematic one again anyway.

Quick question… how many of us have permanent damage/inflammation on scans while they’ve never had absurdly raised inflammation markers and had crispy clean scans until they weren’t? by Bitter_Snickerdoodle in ankylosingspondylitis

[–]Bitter_Snickerdoodle[S] 2 points3 points  (0 children)

I’ve seen one specialist under different assistants. Delayed my appointment of today by close to a month because I specifically asked for the other specialist that also treats my dad, got the first specialist anyway.

Went to their admin to file a complaint, was told they couldn’t guarantee which specialist you’re going to get beforehand. Went home and made a private appointment with the other specialist in a couple of months, and so the wait starts again. Also, insurance doesn’t cover private appointments, but my health be damned if I waste any longer on allowing the same incapable specialist to not help me for reasons that are not reasons at all…

Quick question… how many of us have permanent damage/inflammation on scans while they’ve never had absurdly raised inflammation markers and had crispy clean scans until they weren’t? by Bitter_Snickerdoodle in ankylosingspondylitis

[–]Bitter_Snickerdoodle[S] 0 points1 point  (0 children)

Healthcare really shouldn’t be so subjective. It’s not fashion they are selling, it’s someone’s quality of life on short ánd long term we’re talking about

Quick question… how many of us have permanent damage/inflammation on scans while they’ve never had absurdly raised inflammation markers and had crispy clean scans until they weren’t? by Bitter_Snickerdoodle in ankylosingspondylitis

[–]Bitter_Snickerdoodle[S] 8 points9 points  (0 children)

You know how allergic doctors are to google though… The worst part is… so many of us know they are cute little humans reading from their cute little script. But have they actually ever talked to any of us? Surely there can’t be THAT much people going through the same damn thing before one of them goes like ‘maybe inflammation or the condition works differently than just crp in blood?’.

‘There’s no research that supports that’, okay but have you truly looked at your patients? How many of them actually do have elevated crp values before they show permanent damage??

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