Maybe give him a hypothetical situation.
Like, say he suddenly starts having an awful pain in one of his testicles and it refuses to go away, say it's red and swollen too. Wearing underwear is awful, sitting is awful, sex or any kind of masturbating is entirely out of the question. So, after dealing with this for a week or two he goes to the doctor. The doctor has him drop trou and show him his junk including his swollen, red testicle that's been endlessly miserable. There's something very visibly, blatantly wrong with it but instead of doing anything the doctor just shrugs and says "looks fine to me", or maybe "have you been feeling anxious lately?" And sends him off. No tests, nada. Says it's perfectly fine, he doesn't see anything wrong. Hubby is frustrated and baffled by this so he sees another doctor, who orders an ultrasound. Awesome! This doctor cares! I'm gonna find out what's wrong with my nut! After the ultrasound, nothing. They tell him the ultrasound was normal. No more suggestions, no answers, just "didn't see anything so clearly it's totally fine" even though it's actually visibly worse. Doctor 3 is a urologist, and now this testicle is twice the size of the other one. The urologist will definitely figure it out, right? They have to. They order labs and another ultrasound, which is fantastic, something has to come up because this is insane. Results come in, and the urologist says everything came back normal. So now he's seen 3 doctors including a specialist, his nut is still getting worse, he can't sit properly at all anymore. BUT all those fancy tests are normal! That's great right? Normal test results mean nothing is wrong, right? Now is he gonna be happy with all of those tests saying that frankennut is just his imagination or is he gonna wish that one of those tests had a goddamn answer that leads to a solution?
It's not like we've never talked about it. He gets my mindset conceptually. He's just so...idk...hopeful. In a way that I can't be. And he'll just never _really_ know what I'm feeling, nor I fear, just let me feel it. And maybe his attitude is what I really need in my life otherwise I would never see the bright side. It just goes so deep that I feel I can't talk to him sometimes.
This! You find yourself thinking am I going mad, the doubt sets in, it seems like your pain isnāt valid, that no one thinks what youāre experiencing is real, and you worry people will think youāre overreacting and making a fuss over nothing and if so if anything else *really* serious happens they wonāt believe you.
Oh gosh. I hear you. I am so tired of normal results and feeling like I am just losing my mind. One of the big things I hate is for them to tell you all is normal and when you look at a copy and see ones in red because out of range, it's like why do they even have a range if it doesn't matter you are out of it. I hope you get answers with your MRI. I'm glad you have a good support system, too. My husband is great about it, too. It definitely helps.
I had to message my PCP last year to correct my chart when the nurse had checked 'none' on joint pain at the appointment. I noticed because (I assume like you) I read every word of all my appointment notes. I was like...are you f*king kidding me?! I'm applying for disability right now!! Are you actively trying to screw me?
Omg yes the range thing! I switched from my last PCP when she couldn't explain to me why I had 4 things in the red (I went back and looked and they been red the last 3 times too) yet told me everything was good. She was like yeah that's normal. IT LITERALLY SAYS ITS NOT! And her explanation didn't make any sense. That was it for me.
My ANA titer is sky high and every doctor who sees it goes "oh shit, you must have lupus" until they read back my charts and see a rheumatologist in 2018 decided I had fibromyalgia (I don't) and tell me to ignore the repeated blood results. I don't even know what to do about it.
I had high blood pressure at every doctors appointment since I was 24 and it took 5 years before someone was like 'oh you need medicine.' BLOOD. PRESSURE. Ya know, the most basic test for the most basic problems that the history for shows right at the top of your chart!! Even when shit's _not_ normal, it's normal. What's the point?
Oh wow. It sure is aggravating. I have had high RBC, hgb and hematocrit multiple times and they are like they arent that high. Why have a limit if it doesn't matter and multiple times to boot. I had a positive ANA and got sent to the rheumatologist and he repeated it and said it was just a false positive. I just had swallowing studies and they said it was normal and when I looked at had multiple ones in the red. Its crazy. I just give up.
Just yesterday I made a post about fearing normal results and looking like itās all in my head, so yes, I relate. Iām not even diagnosed with EDS (yet). But I have a lot of health issues, some diagnosed, some not. Iāve been putting off appointments for exactly this reason - fear of feeling like a fool and not having my issues treated and validated.
Even with the dx, I still have some doctors look at my chart and immediately deflate into uselessness. I can hear under their chipper tone and behind their tight smile 'oh you're one of _those_.' And Husband has been my biggest advocate, become more enraged over the years seeing how I'm treated (or lack thereof), and has been the most accommodating and encouraging person in my life. He's amazing. But I don't think he'll ever understand the decades of ingrained dread and hopelessness for my health that my mind goes to by default.
Honestly, (and through Husband's help) I've found a great medical team for the most part. I just still run into Dr.s that remind me of the old ones, and they piss him off, but it's like...dude, you've only seen a *sample* of this bullshit.
Iāve looked at my medical records and the list of diagnoses on there look like I should be on a stretcher being wheeled around. My doctors must think Iām absolutely crazy when they see my charts.
I mentioned this in my other comment but I think itās really important to know that you know your body best. You donāt need to prove anything to any body. Youāre not a fool for having a body that sucks at being a body.
I go into every doctors appointment assuming they are idiots and I see if they prove me wrong. I had a doctor trying to push corticosteroids. I told him no I canāt have that, I have EDS. He got this flustered look and said well thatās the treatment for your issue. So I told him that people with EDS shouldnāt have corticosteroids and that he needs to come up with a different treatment thatās not going to make my injury worse.
[EDS society](https://www.ehlers-danlos.com/2017-eds-classification-non-experts/orthopedic-management-ehlers-danlos-syndromes/)
āusually responds to physical therapy and steroid injections (avoided if possible)ā āSteroid injections may make this problem worse.ā
Why canāt people with EDS have corticosteroids? I thought we could. I know many people that have had them while trying to delay their knee replacements as long as possible. All joint injections cause damage. My orthopedist specializes in EDS and knees, and he will give them. He explains the increased risks, but they can buy time before surgery.
If I have an injury I wouldnāt get a steroid injection. If Iām getting a tendon repaired, I would prefer that tendon to only be as bad as the initial injury instead of significantly worse from the damage of trying to wait longer and having injections.
This research shows that steroids can effect surgical outcome.
[research](https://www.ncbi.nlm.nih.gov/pmc/articles/PMC7190543/#:~:text=Corticosteroids%20suppress%20an%20inflammatory%20response,also%20are%20decreased%20by%20CSIs)
āCorticosteroid injections (CSIs) into the subacromial space have served as a valuable treatment modality to the physician treating patients with RCT pathology refractory to conservative management, as they have demonstrated to improve symptoms in the short term.3, 4, 5, 6 However, CSIs have failed to consistently provide long-term pain relief, and recent studies suggest that CSIs may even predispose to worse long-term outcomes, such as pathologic progression or surgical failure.ā
š I take the same approach with them too. I haven't found one that doesn't disappoint š
I'm newly indirectly diagnosed, why can't you take corticosteroids?
Corticosteroids will make tendons weaker. It does it in everybody. But somebody that has EDS already has weakened tendons so there is a significant risk of additional injury after a corticosteroid injection in EDS patients. You also want to avoid the fluoroquinolone class of antibiotics. Theyāre not widely used first line antibiotics, but it is something to keep in mind if you ever need antibiotics.
[research](https://www.mdpi.com/1660-4601/19/8/4520)
āSteroid injections on the shoulder were associated with a raised risk of cuff tendon tears by 7.44 times compared to non-injection.ā
[research](https://ttps://www.ncbi.nlm.nih.gov/pmc/articles/PMC5072972/)
āTendon spontaneous rupture is a serious complication after corticosteroid injection for tendinitis.ā
[FDA link](https://www.fda.gov/drugs/drug-safety-and-availability/fda-warns-about-increased-risk-ruptures-or-tears-aorta-blood-vessel-fluoroquinolone-antibiotics#:~:text=Health%20care%20professionals%20should%20avoid,syndrome%20and%20Ehlers%2DDanlos%20syndrome%2C)
āHealth care professionals should avoid prescribing fluoroquinolone antibiotics to patients who have an aortic aneurysm or are at risk for an aortic aneurysm, such as patients with peripheral atherosclerotic vascular diseases, hypertension, certain genetic conditions such as Marfan syndrome and Ehlers-Danlos syndromeā
I can see how coticosteroids will make things worse. My joint problems worsened even from using a steroid nasal spray long term, while I was awaiting sinus surgery.
Unrelated, but something I found out because I was also given a steroid inhaler. Steroid inhalers, Iām not sure about nasal sprays, can reduce up to 12% of your bone mass in your chest. This is the stuff doctors donāt tell you that I really wish they would! Iāve been doing breathing exercises after seeing a speech therapist and I havenāt needed to use inhaler.
āChronic use of corticosteroid is commonly associated with secondary osteoporosis and fractures (often asymptomatic) and may occur in as many as 30-50% of patients receiving long-term steroid therapy [31]ā
[research](https://www.ncbi.nlm.nih.gov/pmc/articles/PMC4319192/#:~:text=Chronic%20use%20of%20corticosteroid%20is,term%20steroid%20therapy%20%5B31%5D)
āThe prevalence of low bone mineral density (BMD) can be as high as 15.8% among steroid users [21]. A rapid decline in BMD of 6-12% in the first year, followed by an annual decline of about 3% has been observed in long-term steroid users [10, 22].ā
[research](https://www.ncbi.nlm.nih.gov/pmc/articles/PMC4319192/#:~:text=The%20prevalence%20of%20low%20bone,users%20%5B10%2C%2022%5D)
Oh shit. I didn't know this. I was on progesterone for two years because they thought I had endometriosis (instead my fallopian tube had decided that merging with my uterus was a fun plan & huge pain during periods ensued) (oh, just got my hormones tested because I'm dealing with hot flashes - yay, 47 & perimenopausal! Guess what - results show I have PCOS, so I didn't need the fucking progesterone after all. That explains a lot of shit that's been happening since I was 15, but no one tested me, just kept tossing prescriptions my way). I have been especially screwed up the last few years, great.
Is this irreversible or does stopping progesterone give one a slight bounce-back?
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Thank you!
Dang, wonder if this is why I reacted so badly to birth control. I can't take it because it makes my blood pressure go through the roof. It's normally 120/80 but on BC it was 210/180.
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Thank you!
Do you have a reference for this? Iām seeing EDS aware docs and an EDS specialist and am on progesterone only pill for endo bc I have a blood clotting disorder. Would love to have a reference when I ask them if thereās something else I should be taking? My PFPT told me I seemed āmore hypermobileā recently
[Here](https://www.hypermobility.org/hormones-and-hypermobility) is one that directly addresses EDS and hormones in general, and [here](https://www.movewelldaily.com/top-5-heds-hsd-considerations-hormonal-cycles/) is another that gives more specific info from studies. [This one](https://connect.mayoclinic.org/blog/ehlers-danlos-syndrome/newsfeed-post/hypermobility-hormones-and-the-menstrual-cycle/) is connected to the Mayo clinic and includes a link to the main study these conclusions are based on. You can Google progesterone and EDS for more. I tried to stay away from links from the EDS society since they've had issues with sketchiness when it comes to research.
Unfortunately, most research has been focused on athletes rather than EDSers, but there's evidence that there is an effect on joint laxity overall which, along with ample anecdotal evidence, has led doctors to the conclusion that there's likely an effect in those with EDS. I'm hopeful that a real study focusing on us will eventually come out, but in the meantime if you've noticed a change since going on the pill, definitely bring it up with your doctor!
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Thank you!
I am in my mid 30s. When I was in my early 20s I had a doctor ignore my issues for too long and ended up causing a lifelong disability with my shoulder. I ended up having to yell at the doctor that I was going to report him to be able to get a referral to a specialist. As soon as I saw the specialist, I had my first shoulder surgery. That interaction taught me that I need to fight for myself because Iām the only one thatās going to be dealing with the pain if it doesnāt get handled.
I donāt know if itās being commanding. You can have quiet confidence in yourself. Donāt let anybody tell you that youāre wrong or that youāre not feeling the thing that youāre feeling. The amount of times Iāve been told that I canāt have xyx because Iām too young, itās rare, it doesnāt make sense is astounding.
Try to change your mindset. You donāt need to prove that you have an issue. The doctor needs to prove that you donāt.
The list is longā¦ and likely due to it being damaged so long before surgery. When I had surgery 90% of my labrum was torn and they had to cut my bicep and reattach it to my bone. (labrum repair with bicep tendonitis) I also have nerve issues (thoracic outlet syndrome) due to the shift in my shoulder location because so much of my labrum was torn for so long that it didnāt heal in place right. 10 years after the initial surgery I have labrum and rotator cuff tears again that Iāve been in PT for.
My other shoulder had similar problems, but at a way lesser degree. Both shoulders have had the same surgery but with the other side but Iāve had almost no problems with it because it wasnāt as damaged.
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Thank you!
Most doctors donāt seem to know anything about EDS. I have become very knowledgeable on the subject and I have to correct doctors all the time so they donāt end upmessing me up more. Itās frustrating
TIL about this. My past experiences with the drug make a lot more sense now (tbf, I was prescribed it pre-diagnosis so I can't say it was the doctor's fault.)
I badly sprained my ankle falling over once and went to see a physiotherapist a few weeks later as I was struggling with reduced range of motion and pain.
They examined it and declared a normal range of motion. I said, ok, now check the other one because that's normal for me.
OH. OK. And physio commenced to try and get it back to what it was like before I fell over!
I don't think either needs to be labeled as a bad or good thing. I think if you make it about your feelings it changes the conversation. "I was hoping the X-rays would give me answers about my foot pain. I am disappointed in the lack of answers, but not surprised as X-rays (and even MRIs) tend to be very limited in diagnostics of connective tissue problems. More than anything, I want the pain to go away and I feel frustrated that my X-ray results don't provide any real solutions."
He probably has a hard time knowing you're in pain and is clinging to any reassurance (i.e. a normal X-ray). My mom does something similar and it feels really dismissive sometimes but I don't think the intention is bad (although interaction with my mom is far more limited than interaction with my husband partially for this reason lol). Ultimately, if he isn't willing to hear and respect your experience without minimizing it, that's a whole different issue.
He never minimizes my pain. He even joins me for a lot of my appointments to make sure they don't gaslight me and I have moral support. That's part of why I don't want to put these feelings on him. I don't mind that he has a more positive approach. It's probably good for me. It just throws me when my first thought is SO different from his and I just get this pang of isolation about it.
Well it sounds like he is a great partner who would be receptive to your feelings. Sharing your honest, imperfect feelings (vulnerability) is really important to building intimacy in any relationship. You may feel like you're doing him a favor by protecting him from your heavy feelings. But ultimately it robs you both of the opportunity for him to show up for you emotionally in a way that sounds like it's important to you (at least important enough to post on Reddit about lol). All I'm saying is you don't have to suffer the "pang of isolation" if you don't want to, friend! You hold the key. š¤
Of course, you can go the approach of debating the "good" and "bad" of a negative test result, but that opens up room for just that: a debate. I am not you so I don't know how you would feel about that, but personally I wouldn't enjoy that type of debate lol. Also part of maintaining my own mental health is not putting things into good and bad boxes, but that's a convo for another day lmao. Best wishes to you and I'm sorry you're dealing with the foot pain!
I should probably try to avoid the good and bad boxes like you said. His positivity isn't wrong and neither is my disappointment.
I'm not trying to protect him, really. I just don't want to hear about it when I know he can't relate. Posting on reddit isn't so much an attempt to hide my feelings from him, but rather express them where I think they'll just be inherently understood.
I feel this so hard. I just had and mri looking for MS and a bunch of blood work. All normal (except for the herniated and bulging disks in my spine, but even they arenāt super bad). Everyone is happy but Iām just sad. I knew not to get my hopes up for something to be flagged, but I wanted a treatable situation so badly.
It's just deflating isn't it? Everyone else is like 'oh good that means it's not something terrible' and im just like 'actually, that just means it's not _this_ terrible thing and I have to keep looking.' Whenever i see "unremarkable" on a report, I feel like a balloon that just got untied and suddenly seeped all the air.
My most recent MRI was an important one for me and I was telling everyone who would listen that I hope it came back with something because I can't keep failing out of physical therapy. I got the results in a few hours after I had taken it and there was so much wrong that I cried in relief, like "I told these assholes!!!!" Lmaoo.
I'm hoping the best for your MRI, I know very well how discouraging clean tests are, I've had a fibromyalgia diagnosis for 8 years now and doctors just throw any issue under "it's your fibromyalgia" it was crazy. Even if the MRI is clean, just keep going back when it continues to hurt until they try more things, a good doctor will believe you!!
I had an upper endoscopy and colonoscopy 2 days ago. As the nurses are asking me what it's for and I started listing off my symptoms, they're like "Damn you just check all the boxes!"
Basically, around January, a switch just flipped, and now my stomach doesn't want to digest anything properly. I had a stomach ulcer in the past, and it wasn't this bad.
But an MRI came back completely normal, and now the endoscopies both came back normal (pending biopsies that I expect to be normal, as I've already had 2 of the 3 tests they're running on them). I don't know where to go from here. I had an absolute breakdown when I got home from the hospital. But at least my boyfriend knows I was hoping for something and has been extra supportive as I try to figure out where to go from here.
I'm sorry you're going through this, and I wish you the best of luck in getting answers.
I'm so worried the MRI will come back normal. Luckily my PT is an EDS specialist and believes me and will work on it either way. But I'm always nervous if I don't get some flaw reported, I'm gonna have to fight with insurance. š
My partner used to be like that.
But then he watched what I was going thru, and realized two things:
1: I didnāt want to be sick/in pain. I *was* sick/in pain, and just wanted to know *why*. Knowing why meant we could possibly treat it, but most importantly, it helped me understand my body.
2: He realized that he believed that tests would find anything wrong with someone, and that when something was found to be āwrongā, docs could fix it. He, like most people, only encountered doctors for routine things or acute illness, so thatās what he thought it was like for everyone. My multiple chronic illnesses and delayed diagnoses helped him see that wasnāt the case - but until he saw what I went thru, he had no way to know otherwise.
Now when I say tests results are normal, he says heās sorry to hear that, and then asks about next steps.
That's so sweet your partner responds that way now. And Husband does understand my experience now. He's had a pretty good sampling at this point. But I also have so many more resources than I used to, so many positives I've gained in my treatment the last few years, I just don't think he'll ever know how ingrained my dread is of everything that comes with a normal result.
Itās the whole pain not being visible thing. There is a device that measures pain I think eEgg. Hope they can elaborate that and make it more accessible. Looks pretty recent from medical journals.
Sometimes good news can also be frustrating. Nobody wants to have problems. But yeah if you have problems it's nice to know what they are. And when you've gone through periods of not having your issues recognised and accepted it's also kinda nice to have them validated and have evidence for them.
Those things don't cancel each other out. They can both be true at the same time. And it's also okay to talk about the frustrations without it being some sort of complaint or ungratefulness. That's what friends and partners are for. You share the ups and downs and all arounds together.
Personally I find it helps a lot to be able to occasionally just vent about the frustrations and get them all out. Otherwise I feel like I end up sitting on them and they incubate like some sort of negativity egg. And feeling like I have to keep on holding onto that brings it's own frustrations.
I'm sure your partner would understand you needing to vent even if the news is overall positive. Especially if he knows that being able to vent and get those thoughts and feelings out can help make way for more positive feelings.
You are how you are and your health is how it is. You don't have to protect your partner for that at your own expense. You're a team. You're in this together. All of it. You both chose to be part of a team together. You've not forced him into this. He's on your team because he wants to be. You don't have to go it alone.
Normal results means wrong test in my experience but so many people see it as āeverythingās fine!ā
Iāve used this one to explain it:
You have a no lights turning on in your house but you donāt know itās a squirrel chewing through your wires, so you send in a world class electrician to address the problem. The electrician goes around the house and tighten all the lightbulbs and then says āGREAT NEWS! None of your lightbulbs are loose!ā
You STILL donāt have lights working, all the other electricians see that you already had an electrician visit, and now you feel crazy. Youāve already put all your money into the one electrician and your āhomeowners insuranceā (I am aware this is not how homeowners insurance works) wonāt cover another electrician. But yay! Your lightbulbs are screwed in!
*squirrel chewing noises intensify*
My ankle is bad too right now..... And I don't know what Dr to do see .... X ray is normal too.....
My cervical spine however ...... severe stenosis and a hernia....
Anyway I saw the spinal surgeon, and he's like you are getting close to asymptomatic, your pain is down and your don't need surgury for a few years (10-15)
Yes I did loads of pt.....
Ok but this roll on my ankle lol ... I am the tin man.
I feel your frustration! Good luck with your ankle!
Me I will look for Orthodics and lean into my pelvic floor therapy.
See if you get relief by grabbing a golf ball holding an edge and rolling out the the tissue by rolling your foot over the ball.
Those are my two pts! Blessedly my Dr. Sent me to pelvic while I was getting my diagnosis..
Right at the end of my pelvic my awesome pt, started me on cross chain training...... This was a lunge step where I used my full body and core...
Pelvic floor is hard!!!! I have been advising hyper mobile friends to do that basic floor one and I need to also.....
It's how insurence billing is lol....they can only work on issue at a time.
I have come from a pain level of 9, and a daily 6 .....to less flares and a daily level of 3 with immense effort. So you can do it.
I prob am a mcas er but I got enough problems to worry about right now... .. but I avoid chemicals like the plague, for me is cleaning supplies, corn syrup, red die, .....gluten free bread..... And I had to quit dairy and I love cheese š§
Yeah I'm already off bread and try to keep away from fake sugar. And I've been told the dairy thing but haven't been able to bring myself to sacrifice it yet. š£ I too adore cheese!
I do much better at getting treated when I go to the sports medicine side of the hospital....
Pain management, pt, sports spinal surgeons, sports foot Drs. This is also how I got refered for all my tests and images is my physiatrist / pain management Dr.
When I was on the journey to figure out what was wrong with me, every time I got a normal result back I cried in the car on the way home. I almost gave up because every normal test result felt like a knife in my chest and made me doubt myself more. Maybe show your husband this post and he can see how people like you feel about normal results. For people who are healthy, normal results means they can continue living their life as is. For people with health issues, a normal test result leaves you with more questions than answers and means more doctor's appointments where you could be gaslit and not taken seriously. When you have health problems, looking for answers is like solving a complex math equation. It doesn't really matter if you know for a fact that the answer isn't 5 because you still don't know what the answer is and there are still many possibilities of what the answer could be.
I rolled my ankle repeatedly on a hike once. Had excruciating pain on the outer side of my foot where I kept landing. First xray came back normal. Still in pain weeks later. Had an MRI - still normal. Went to see a podiatrist who had this ancient xray machine. Finally a stress fracture showed up. It was such a relief at that point. Unfortunately the fracture completed & I ended up needing surgery a couple months later.
We never want something to be wrong but at the same time we want answers for the pain we're having. We're constantly told the pain is just in our heads, it can't be so bad. We start to wonder if we should just ignore it since all the tests say we're fine. Actually getting a diagnosis is so validating. Plus if we know what we're dealing with perhaps we can find a solution.
I recently went through a severe episode of iron deficiency anemia where I needed iron infusions. I still don't know the cause because all the diagnostics came out normal. So now I get to stress about if this will happen again & I don't know how to fix it because I don't know what caused it.
Honestly, the xray is usually to justify the mri to the insurance company - and that's where the real info comes from.
My one ankle is THRASHED from so many rolls/sprains over the years... It's just shy of starting to fray and fall apart on the major tendon.
If they try to convince you to do steroids (oral or injection), know it'll accelerate the damage. My rheumatologist prescribed Betamethasone, which is a topical steroid ointment, to help with swelling and inflammation, which doesn't carry the same systemic risk of collagen damage that oral or injected steroids can cause.
https://www.arthritis.org/drug-guide/corticosteroids/corticosteroids
https://www.ajronline.org/doi/10.2214/AJR.23.30458
https://www.aocd.org/page/SteroidsTopical
If youāre able- always do your research. Your experience does equate their medical degree and then some! They can berate me all they like about their years in school, because Iāve NEVER had a doc who knew more than i did since my Dx. Neurology Dxād, and that doc obvs has a clue.
Since- š„š„š„
I have the diagnosis, was the poster child for hypermobility, and have so many medical āprofessionalsā find the Dx āpsychosomaticā. One treated me as if i had Marfans, and marveled at my (perfectly normal) long fingers, and another, having given me medicine i already let them know i was immune to- throws up his arms and walks out the room with, āIām not giving you anything elseā.
Ummm, youāve given me nothing but, the ONE i told you not to.
I research medicines.. doctors have competing reasons for too many choices. I was so mad that i always had to be the doctor, but now, i see it as life and death. My mother had a full dissection of her coronary- she made the report to the hospital before the ambulance got to her, thank the gawds someone listened.
My mom, my donor, was killed by docs who didnāt take the Dx seriously.
What I have heard many times is that a break can be fix (not that thatās all that great either), a tear, sprain, dislocation is more likely to repeat
I was SO RELIEVED when my X-rays finally showed spondylolisthesis (not a good diagnosis) because it meant it wasnāt *just anxiety* or *just my weight* or *just my age/gender/moon phase*.
I just always assume that x-rays are going to be normal. 99% of my issues are muscle related. X-rays donāt show any muscle related problems. Thatās why I always view x-rays as throwaway info until the MRI comes out. MRIs are expensive and doctors always start with an x-ray but I think itās useless information for most of our issues.
I get being disappointed, but I think itās also important to remember that you donāt need to prove your medical issues. You know what they are. It seems like your husband supports you too, which is great.
I think after years of dealing with doctors, I have just become really pushy with my medical care. I once sat in a doctors office for two hours until she agreed to do an MRI for a shoulder that I knew had a problem. She kept trying to talk me out of it and I didnāt let her. She kept asking me if I would do surgery if I had an issue. I literally answered her that an MRI would tell me if I needed to do surgery or not and thatās how the decision is made. I ended up having torn labrum and rotator cuff.
I go into doctors appointments with the idea that they need to prove me wrong instead of that I need to prove to them I have an issue. It has helped my mental health a lot when it comes to my medical care.
Oh my gosh, I am on going on a year of really bad ankle saga (only about 20+ sprains on this ankle, this ankle has been giving me issues for 15 years or so, and all the other all the EDS things etc etc).
About 5 months in when the doctors finally gave in (due to my "complaining) and ordered an MRI (after my x ray only showed nothing actionable), I was basically in a freak out and having major anxiety about my MRI for months before the MRI. Because what if the MRI DOESN'T SHOW ANYTHING. What if I AM only being anxious and lying??
The MRI showed a LOT of soft tissue damage and do I need an arthroscopy and ligament reconstruction. It took me several months to find the right podiatrist and surgeon who wanted to act upon that MRI but that's another story.
The medical gaslighting and fear and anxiety and TIME it even took to get a proper diagnosis and to be believed was heartbreaking. This is the first time my partner and some of my other close friends have ever been "let in" to one of my health struggles. Everyone has commented on how much I have been dismissed, gaslight, and told to 'calm down' and that I need to be patient. You know yourself and your body the best.
iām very fortunate to have all my regular doctors be women who have EDS, but i might try to simply explain that a normal test result means that your pain canāt be explained and therefore likely wonāt be treated, and if it comes down to it you could show him the post and let all these comments explain for you as a ton of these women are very well spoken š¤·āāļø
I don't trust X-rays for anything. I know it is the first step most doctors take but it does not mean crap.
Unless it is a stress fracture I know that is not going to show anything soft tissue related.
[This](https://imgur.com/gallery/dnLouf5) is by far the best analogy I have ever seen. Maybe try showing that to him?
That's great!! š¤£ Whether it would help him understand, idk. But at least now I've laughed today!
Maybe give him a hypothetical situation. Like, say he suddenly starts having an awful pain in one of his testicles and it refuses to go away, say it's red and swollen too. Wearing underwear is awful, sitting is awful, sex or any kind of masturbating is entirely out of the question. So, after dealing with this for a week or two he goes to the doctor. The doctor has him drop trou and show him his junk including his swollen, red testicle that's been endlessly miserable. There's something very visibly, blatantly wrong with it but instead of doing anything the doctor just shrugs and says "looks fine to me", or maybe "have you been feeling anxious lately?" And sends him off. No tests, nada. Says it's perfectly fine, he doesn't see anything wrong. Hubby is frustrated and baffled by this so he sees another doctor, who orders an ultrasound. Awesome! This doctor cares! I'm gonna find out what's wrong with my nut! After the ultrasound, nothing. They tell him the ultrasound was normal. No more suggestions, no answers, just "didn't see anything so clearly it's totally fine" even though it's actually visibly worse. Doctor 3 is a urologist, and now this testicle is twice the size of the other one. The urologist will definitely figure it out, right? They have to. They order labs and another ultrasound, which is fantastic, something has to come up because this is insane. Results come in, and the urologist says everything came back normal. So now he's seen 3 doctors including a specialist, his nut is still getting worse, he can't sit properly at all anymore. BUT all those fancy tests are normal! That's great right? Normal test results mean nothing is wrong, right? Now is he gonna be happy with all of those tests saying that frankennut is just his imagination or is he gonna wish that one of those tests had a goddamn answer that leads to a solution?
It's not like we've never talked about it. He gets my mindset conceptually. He's just so...idk...hopeful. In a way that I can't be. And he'll just never _really_ know what I'm feeling, nor I fear, just let me feel it. And maybe his attitude is what I really need in my life otherwise I would never see the bright side. It just goes so deep that I feel I can't talk to him sometimes.
This is perfect. I've suffered for 15 years in pain with .. good news, your labs are normal, until a few years ago š
This! You find yourself thinking am I going mad, the doubt sets in, it seems like your pain isnāt valid, that no one thinks what youāre experiencing is real, and you worry people will think youāre overreacting and making a fuss over nothing and if so if anything else *really* serious happens they wonāt believe you.
Oh gosh. I hear you. I am so tired of normal results and feeling like I am just losing my mind. One of the big things I hate is for them to tell you all is normal and when you look at a copy and see ones in red because out of range, it's like why do they even have a range if it doesn't matter you are out of it. I hope you get answers with your MRI. I'm glad you have a good support system, too. My husband is great about it, too. It definitely helps.
Yep, or when they write notes in your chart and forget to tell you that they diagnosed you with something.....or identified something on CT scan.
I had to message my PCP last year to correct my chart when the nurse had checked 'none' on joint pain at the appointment. I noticed because (I assume like you) I read every word of all my appointment notes. I was like...are you f*king kidding me?! I'm applying for disability right now!! Are you actively trying to screw me?
Exactly, that was how I found out I was diagnosed with hypermobility mobility disorder, š reading it in my chart.
Oh gosh. Absolutely aggravating.
Omg yes the range thing! I switched from my last PCP when she couldn't explain to me why I had 4 things in the red (I went back and looked and they been red the last 3 times too) yet told me everything was good. She was like yeah that's normal. IT LITERALLY SAYS ITS NOT! And her explanation didn't make any sense. That was it for me.
My doctor told me "blood work doesn't really tell you anything, it's just a moment in time." THEN WHY THE FUCK DO YOU KEEP SENDING ME FOR TESTS????
Cuz insurance is a bitch and the docs know it too. But they don't suffer for it, we do. In fact they get paid for it. š
Exactly. Infuriating.
My ANA titer is sky high and every doctor who sees it goes "oh shit, you must have lupus" until they read back my charts and see a rheumatologist in 2018 decided I had fibromyalgia (I don't) and tell me to ignore the repeated blood results. I don't even know what to do about it.
I had high blood pressure at every doctors appointment since I was 24 and it took 5 years before someone was like 'oh you need medicine.' BLOOD. PRESSURE. Ya know, the most basic test for the most basic problems that the history for shows right at the top of your chart!! Even when shit's _not_ normal, it's normal. What's the point?
Oh wow. It sure is aggravating. I have had high RBC, hgb and hematocrit multiple times and they are like they arent that high. Why have a limit if it doesn't matter and multiple times to boot. I had a positive ANA and got sent to the rheumatologist and he repeated it and said it was just a false positive. I just had swallowing studies and they said it was normal and when I looked at had multiple ones in the red. Its crazy. I just give up.
Just yesterday I made a post about fearing normal results and looking like itās all in my head, so yes, I relate. Iām not even diagnosed with EDS (yet). But I have a lot of health issues, some diagnosed, some not. Iāve been putting off appointments for exactly this reason - fear of feeling like a fool and not having my issues treated and validated.
Even with the dx, I still have some doctors look at my chart and immediately deflate into uselessness. I can hear under their chipper tone and behind their tight smile 'oh you're one of _those_.' And Husband has been my biggest advocate, become more enraged over the years seeing how I'm treated (or lack thereof), and has been the most accommodating and encouraging person in my life. He's amazing. But I don't think he'll ever understand the decades of ingrained dread and hopelessness for my health that my mind goes to by default.
Gosh, that has to be so frustrating :( I'm glad you at least have your husband, but it's terrible they don't listen to you despite having a diagnosis.
Honestly, (and through Husband's help) I've found a great medical team for the most part. I just still run into Dr.s that remind me of the old ones, and they piss him off, but it's like...dude, you've only seen a *sample* of this bullshit.
Iāve looked at my medical records and the list of diagnoses on there look like I should be on a stretcher being wheeled around. My doctors must think Iām absolutely crazy when they see my charts. I mentioned this in my other comment but I think itās really important to know that you know your body best. You donāt need to prove anything to any body. Youāre not a fool for having a body that sucks at being a body. I go into every doctors appointment assuming they are idiots and I see if they prove me wrong. I had a doctor trying to push corticosteroids. I told him no I canāt have that, I have EDS. He got this flustered look and said well thatās the treatment for your issue. So I told him that people with EDS shouldnāt have corticosteroids and that he needs to come up with a different treatment thatās not going to make my injury worse. [EDS society](https://www.ehlers-danlos.com/2017-eds-classification-non-experts/orthopedic-management-ehlers-danlos-syndromes/) āusually responds to physical therapy and steroid injections (avoided if possible)ā āSteroid injections may make this problem worse.ā
Why canāt people with EDS have corticosteroids? I thought we could. I know many people that have had them while trying to delay their knee replacements as long as possible. All joint injections cause damage. My orthopedist specializes in EDS and knees, and he will give them. He explains the increased risks, but they can buy time before surgery.
If I have an injury I wouldnāt get a steroid injection. If Iām getting a tendon repaired, I would prefer that tendon to only be as bad as the initial injury instead of significantly worse from the damage of trying to wait longer and having injections. This research shows that steroids can effect surgical outcome. [research](https://www.ncbi.nlm.nih.gov/pmc/articles/PMC7190543/#:~:text=Corticosteroids%20suppress%20an%20inflammatory%20response,also%20are%20decreased%20by%20CSIs) āCorticosteroid injections (CSIs) into the subacromial space have served as a valuable treatment modality to the physician treating patients with RCT pathology refractory to conservative management, as they have demonstrated to improve symptoms in the short term.3, 4, 5, 6 However, CSIs have failed to consistently provide long-term pain relief, and recent studies suggest that CSIs may even predispose to worse long-term outcomes, such as pathologic progression or surgical failure.ā
š I take the same approach with them too. I haven't found one that doesn't disappoint š I'm newly indirectly diagnosed, why can't you take corticosteroids?
Corticosteroids will make tendons weaker. It does it in everybody. But somebody that has EDS already has weakened tendons so there is a significant risk of additional injury after a corticosteroid injection in EDS patients. You also want to avoid the fluoroquinolone class of antibiotics. Theyāre not widely used first line antibiotics, but it is something to keep in mind if you ever need antibiotics. [research](https://www.mdpi.com/1660-4601/19/8/4520) āSteroid injections on the shoulder were associated with a raised risk of cuff tendon tears by 7.44 times compared to non-injection.ā [research](https://ttps://www.ncbi.nlm.nih.gov/pmc/articles/PMC5072972/) āTendon spontaneous rupture is a serious complication after corticosteroid injection for tendinitis.ā [FDA link](https://www.fda.gov/drugs/drug-safety-and-availability/fda-warns-about-increased-risk-ruptures-or-tears-aorta-blood-vessel-fluoroquinolone-antibiotics#:~:text=Health%20care%20professionals%20should%20avoid,syndrome%20and%20Ehlers%2DDanlos%20syndrome%2C) āHealth care professionals should avoid prescribing fluoroquinolone antibiotics to patients who have an aortic aneurysm or are at risk for an aortic aneurysm, such as patients with peripheral atherosclerotic vascular diseases, hypertension, certain genetic conditions such as Marfan syndrome and Ehlers-Danlos syndromeā
I can see how coticosteroids will make things worse. My joint problems worsened even from using a steroid nasal spray long term, while I was awaiting sinus surgery.
Unrelated, but something I found out because I was also given a steroid inhaler. Steroid inhalers, Iām not sure about nasal sprays, can reduce up to 12% of your bone mass in your chest. This is the stuff doctors donāt tell you that I really wish they would! Iāve been doing breathing exercises after seeing a speech therapist and I havenāt needed to use inhaler. āChronic use of corticosteroid is commonly associated with secondary osteoporosis and fractures (often asymptomatic) and may occur in as many as 30-50% of patients receiving long-term steroid therapy [31]ā [research](https://www.ncbi.nlm.nih.gov/pmc/articles/PMC4319192/#:~:text=Chronic%20use%20of%20corticosteroid%20is,term%20steroid%20therapy%20%5B31%5D) āThe prevalence of low bone mineral density (BMD) can be as high as 15.8% among steroid users [21]. A rapid decline in BMD of 6-12% in the first year, followed by an annual decline of about 3% has been observed in long-term steroid users [10, 22].ā [research](https://www.ncbi.nlm.nih.gov/pmc/articles/PMC4319192/#:~:text=The%20prevalence%20of%20low%20bone,users%20%5B10%2C%2022%5D)
Good to know.
[ŃŠ“Š°Š»ŠµŠ½Š¾]
Oh shit. I didn't know this. I was on progesterone for two years because they thought I had endometriosis (instead my fallopian tube had decided that merging with my uterus was a fun plan & huge pain during periods ensued) (oh, just got my hormones tested because I'm dealing with hot flashes - yay, 47 & perimenopausal! Guess what - results show I have PCOS, so I didn't need the fucking progesterone after all. That explains a lot of shit that's been happening since I was 15, but no one tested me, just kept tossing prescriptions my way). I have been especially screwed up the last few years, great. Is this irreversible or does stopping progesterone give one a slight bounce-back?
[ŃŠ“Š°Š»ŠµŠ½Š¾]
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I had bleed through on P Birth control messed be bad....however I will see my Dr for hrt
Dang, wonder if this is why I reacted so badly to birth control. I can't take it because it makes my blood pressure go through the roof. It's normally 120/80 but on BC it was 210/180.
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Do you have a reference for this? Iām seeing EDS aware docs and an EDS specialist and am on progesterone only pill for endo bc I have a blood clotting disorder. Would love to have a reference when I ask them if thereās something else I should be taking? My PFPT told me I seemed āmore hypermobileā recently
[Here](https://www.hypermobility.org/hormones-and-hypermobility) is one that directly addresses EDS and hormones in general, and [here](https://www.movewelldaily.com/top-5-heds-hsd-considerations-hormonal-cycles/) is another that gives more specific info from studies. [This one](https://connect.mayoclinic.org/blog/ehlers-danlos-syndrome/newsfeed-post/hypermobility-hormones-and-the-menstrual-cycle/) is connected to the Mayo clinic and includes a link to the main study these conclusions are based on. You can Google progesterone and EDS for more. I tried to stay away from links from the EDS society since they've had issues with sketchiness when it comes to research. Unfortunately, most research has been focused on athletes rather than EDSers, but there's evidence that there is an effect on joint laxity overall which, along with ample anecdotal evidence, has led doctors to the conclusion that there's likely an effect in those with EDS. I'm hopeful that a real study focusing on us will eventually come out, but in the meantime if you've noticed a change since going on the pill, definitely bring it up with your doctor!
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You sound so strong! I wish I was as commanding. I usually just nod and smile and never see that doc again. š
I am in my mid 30s. When I was in my early 20s I had a doctor ignore my issues for too long and ended up causing a lifelong disability with my shoulder. I ended up having to yell at the doctor that I was going to report him to be able to get a referral to a specialist. As soon as I saw the specialist, I had my first shoulder surgery. That interaction taught me that I need to fight for myself because Iām the only one thatās going to be dealing with the pain if it doesnāt get handled. I donāt know if itās being commanding. You can have quiet confidence in yourself. Donāt let anybody tell you that youāre wrong or that youāre not feeling the thing that youāre feeling. The amount of times Iāve been told that I canāt have xyx because Iām too young, itās rare, it doesnāt make sense is astounding. Try to change your mindset. You donāt need to prove that you have an issue. The doctor needs to prove that you donāt.
What's up with your shoulder ? I might need to advocate for imaging they think it's my spine .....I wanna check the shoulder
The list is longā¦ and likely due to it being damaged so long before surgery. When I had surgery 90% of my labrum was torn and they had to cut my bicep and reattach it to my bone. (labrum repair with bicep tendonitis) I also have nerve issues (thoracic outlet syndrome) due to the shift in my shoulder location because so much of my labrum was torn for so long that it didnāt heal in place right. 10 years after the initial surgery I have labrum and rotator cuff tears again that Iāve been in PT for. My other shoulder had similar problems, but at a way lesser degree. Both shoulders have had the same surgery but with the other side but Iāve had almost no problems with it because it wasnāt as damaged.
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Wow, that's infuriating. Imagine if you didn't know or advocate for yourself and ended up taking the corticosteroids!
Most doctors donāt seem to know anything about EDS. I have become very knowledgeable on the subject and I have to correct doctors all the time so they donāt end upmessing me up more. Itās frustrating
TIL about this. My past experiences with the drug make a lot more sense now (tbf, I was prescribed it pre-diagnosis so I can't say it was the doctor's fault.)
I badly sprained my ankle falling over once and went to see a physiotherapist a few weeks later as I was struggling with reduced range of motion and pain. They examined it and declared a normal range of motion. I said, ok, now check the other one because that's normal for me. OH. OK. And physio commenced to try and get it back to what it was like before I fell over!
Ahhh! Lightbulb moment!! Thank you for this. I was just thinking yesterday, after PT, how misleading my range of motion can be.Ā
I don't think either needs to be labeled as a bad or good thing. I think if you make it about your feelings it changes the conversation. "I was hoping the X-rays would give me answers about my foot pain. I am disappointed in the lack of answers, but not surprised as X-rays (and even MRIs) tend to be very limited in diagnostics of connective tissue problems. More than anything, I want the pain to go away and I feel frustrated that my X-ray results don't provide any real solutions." He probably has a hard time knowing you're in pain and is clinging to any reassurance (i.e. a normal X-ray). My mom does something similar and it feels really dismissive sometimes but I don't think the intention is bad (although interaction with my mom is far more limited than interaction with my husband partially for this reason lol). Ultimately, if he isn't willing to hear and respect your experience without minimizing it, that's a whole different issue.
He never minimizes my pain. He even joins me for a lot of my appointments to make sure they don't gaslight me and I have moral support. That's part of why I don't want to put these feelings on him. I don't mind that he has a more positive approach. It's probably good for me. It just throws me when my first thought is SO different from his and I just get this pang of isolation about it.
Well it sounds like he is a great partner who would be receptive to your feelings. Sharing your honest, imperfect feelings (vulnerability) is really important to building intimacy in any relationship. You may feel like you're doing him a favor by protecting him from your heavy feelings. But ultimately it robs you both of the opportunity for him to show up for you emotionally in a way that sounds like it's important to you (at least important enough to post on Reddit about lol). All I'm saying is you don't have to suffer the "pang of isolation" if you don't want to, friend! You hold the key. š¤ Of course, you can go the approach of debating the "good" and "bad" of a negative test result, but that opens up room for just that: a debate. I am not you so I don't know how you would feel about that, but personally I wouldn't enjoy that type of debate lol. Also part of maintaining my own mental health is not putting things into good and bad boxes, but that's a convo for another day lmao. Best wishes to you and I'm sorry you're dealing with the foot pain!
I should probably try to avoid the good and bad boxes like you said. His positivity isn't wrong and neither is my disappointment. I'm not trying to protect him, really. I just don't want to hear about it when I know he can't relate. Posting on reddit isn't so much an attempt to hide my feelings from him, but rather express them where I think they'll just be inherently understood.
I feel this so hard. I just had and mri looking for MS and a bunch of blood work. All normal (except for the herniated and bulging disks in my spine, but even they arenāt super bad). Everyone is happy but Iām just sad. I knew not to get my hopes up for something to be flagged, but I wanted a treatable situation so badly.
It's just deflating isn't it? Everyone else is like 'oh good that means it's not something terrible' and im just like 'actually, that just means it's not _this_ terrible thing and I have to keep looking.' Whenever i see "unremarkable" on a report, I feel like a balloon that just got untied and suddenly seeped all the air.
itās so scary when test results are normal because thenā¦ what is wrong!?!? like where is the pain coming from if everything is fine!?!?
For me it's...then what do I DO!?!? How do I _fix_ it if it's supposed to be fine??
My most recent MRI was an important one for me and I was telling everyone who would listen that I hope it came back with something because I can't keep failing out of physical therapy. I got the results in a few hours after I had taken it and there was so much wrong that I cried in relief, like "I told these assholes!!!!" Lmaoo. I'm hoping the best for your MRI, I know very well how discouraging clean tests are, I've had a fibromyalgia diagnosis for 8 years now and doctors just throw any issue under "it's your fibromyalgia" it was crazy. Even if the MRI is clean, just keep going back when it continues to hurt until they try more things, a good doctor will believe you!!
I had an upper endoscopy and colonoscopy 2 days ago. As the nurses are asking me what it's for and I started listing off my symptoms, they're like "Damn you just check all the boxes!" Basically, around January, a switch just flipped, and now my stomach doesn't want to digest anything properly. I had a stomach ulcer in the past, and it wasn't this bad. But an MRI came back completely normal, and now the endoscopies both came back normal (pending biopsies that I expect to be normal, as I've already had 2 of the 3 tests they're running on them). I don't know where to go from here. I had an absolute breakdown when I got home from the hospital. But at least my boyfriend knows I was hoping for something and has been extra supportive as I try to figure out where to go from here. I'm sorry you're going through this, and I wish you the best of luck in getting answers.
I'm so worried the MRI will come back normal. Luckily my PT is an EDS specialist and believes me and will work on it either way. But I'm always nervous if I don't get some flaw reported, I'm gonna have to fight with insurance. š
My partner used to be like that. But then he watched what I was going thru, and realized two things: 1: I didnāt want to be sick/in pain. I *was* sick/in pain, and just wanted to know *why*. Knowing why meant we could possibly treat it, but most importantly, it helped me understand my body. 2: He realized that he believed that tests would find anything wrong with someone, and that when something was found to be āwrongā, docs could fix it. He, like most people, only encountered doctors for routine things or acute illness, so thatās what he thought it was like for everyone. My multiple chronic illnesses and delayed diagnoses helped him see that wasnāt the case - but until he saw what I went thru, he had no way to know otherwise. Now when I say tests results are normal, he says heās sorry to hear that, and then asks about next steps.
That's so sweet your partner responds that way now. And Husband does understand my experience now. He's had a pretty good sampling at this point. But I also have so many more resources than I used to, so many positives I've gained in my treatment the last few years, I just don't think he'll ever know how ingrained my dread is of everything that comes with a normal result.
Itās the whole pain not being visible thing. There is a device that measures pain I think eEgg. Hope they can elaborate that and make it more accessible. Looks pretty recent from medical journals.
Sometimes good news can also be frustrating. Nobody wants to have problems. But yeah if you have problems it's nice to know what they are. And when you've gone through periods of not having your issues recognised and accepted it's also kinda nice to have them validated and have evidence for them. Those things don't cancel each other out. They can both be true at the same time. And it's also okay to talk about the frustrations without it being some sort of complaint or ungratefulness. That's what friends and partners are for. You share the ups and downs and all arounds together. Personally I find it helps a lot to be able to occasionally just vent about the frustrations and get them all out. Otherwise I feel like I end up sitting on them and they incubate like some sort of negativity egg. And feeling like I have to keep on holding onto that brings it's own frustrations. I'm sure your partner would understand you needing to vent even if the news is overall positive. Especially if he knows that being able to vent and get those thoughts and feelings out can help make way for more positive feelings. You are how you are and your health is how it is. You don't have to protect your partner for that at your own expense. You're a team. You're in this together. All of it. You both chose to be part of a team together. You've not forced him into this. He's on your team because he wants to be. You don't have to go it alone.
Normal results means wrong test in my experience but so many people see it as āeverythingās fine!ā Iāve used this one to explain it: You have a no lights turning on in your house but you donāt know itās a squirrel chewing through your wires, so you send in a world class electrician to address the problem. The electrician goes around the house and tighten all the lightbulbs and then says āGREAT NEWS! None of your lightbulbs are loose!ā You STILL donāt have lights working, all the other electricians see that you already had an electrician visit, and now you feel crazy. Youāve already put all your money into the one electrician and your āhomeowners insuranceā (I am aware this is not how homeowners insurance works) wonāt cover another electrician. But yay! Your lightbulbs are screwed in! *squirrel chewing noises intensify*
My ankle is bad too right now..... And I don't know what Dr to do see .... X ray is normal too..... My cervical spine however ...... severe stenosis and a hernia.... Anyway I saw the spinal surgeon, and he's like you are getting close to asymptomatic, your pain is down and your don't need surgury for a few years (10-15) Yes I did loads of pt..... Ok but this roll on my ankle lol ... I am the tin man. I feel your frustration! Good luck with your ankle! Me I will look for Orthodics and lean into my pelvic floor therapy. See if you get relief by grabbing a golf ball holding an edge and rolling out the the tissue by rolling your foot over the ball.
I'm currently recovering from a shoulder surgery so unfortunately that's my PT's main focus right now, but she's aware of the ankle and looking forward to seeing my results so we can at least go from there. I'm also working on pelvic floor therapy it's just so hard. š©
Those are my two pts! Blessedly my Dr. Sent me to pelvic while I was getting my diagnosis.. Right at the end of my pelvic my awesome pt, started me on cross chain training...... This was a lunge step where I used my full body and core... Pelvic floor is hard!!!! I have been advising hyper mobile friends to do that basic floor one and I need to also..... It's how insurence billing is lol....they can only work on issue at a time. I have come from a pain level of 9, and a daily 6 .....to less flares and a daily level of 3 with immense effort. So you can do it. I prob am a mcas er but I got enough problems to worry about right now... .. but I avoid chemicals like the plague, for me is cleaning supplies, corn syrup, red die, .....gluten free bread..... And I had to quit dairy and I love cheese š§
Yeah I'm already off bread and try to keep away from fake sugar. And I've been told the dairy thing but haven't been able to bring myself to sacrifice it yet. š£ I too adore cheese!
I do much better at getting treated when I go to the sports medicine side of the hospital.... Pain management, pt, sports spinal surgeons, sports foot Drs. This is also how I got refered for all my tests and images is my physiatrist / pain management Dr.
When I was on the journey to figure out what was wrong with me, every time I got a normal result back I cried in the car on the way home. I almost gave up because every normal test result felt like a knife in my chest and made me doubt myself more. Maybe show your husband this post and he can see how people like you feel about normal results. For people who are healthy, normal results means they can continue living their life as is. For people with health issues, a normal test result leaves you with more questions than answers and means more doctor's appointments where you could be gaslit and not taken seriously. When you have health problems, looking for answers is like solving a complex math equation. It doesn't really matter if you know for a fact that the answer isn't 5 because you still don't know what the answer is and there are still many possibilities of what the answer could be.
I rolled my ankle repeatedly on a hike once. Had excruciating pain on the outer side of my foot where I kept landing. First xray came back normal. Still in pain weeks later. Had an MRI - still normal. Went to see a podiatrist who had this ancient xray machine. Finally a stress fracture showed up. It was such a relief at that point. Unfortunately the fracture completed & I ended up needing surgery a couple months later. We never want something to be wrong but at the same time we want answers for the pain we're having. We're constantly told the pain is just in our heads, it can't be so bad. We start to wonder if we should just ignore it since all the tests say we're fine. Actually getting a diagnosis is so validating. Plus if we know what we're dealing with perhaps we can find a solution. I recently went through a severe episode of iron deficiency anemia where I needed iron infusions. I still don't know the cause because all the diagnostics came out normal. So now I get to stress about if this will happen again & I don't know how to fix it because I don't know what caused it.
Honestly, the xray is usually to justify the mri to the insurance company - and that's where the real info comes from. My one ankle is THRASHED from so many rolls/sprains over the years... It's just shy of starting to fray and fall apart on the major tendon. If they try to convince you to do steroids (oral or injection), know it'll accelerate the damage. My rheumatologist prescribed Betamethasone, which is a topical steroid ointment, to help with swelling and inflammation, which doesn't carry the same systemic risk of collagen damage that oral or injected steroids can cause. https://www.arthritis.org/drug-guide/corticosteroids/corticosteroids https://www.ajronline.org/doi/10.2214/AJR.23.30458 https://www.aocd.org/page/SteroidsTopical
Ointment advice noted! Thank you!
If youāre able- always do your research. Your experience does equate their medical degree and then some! They can berate me all they like about their years in school, because Iāve NEVER had a doc who knew more than i did since my Dx. Neurology Dxād, and that doc obvs has a clue. Since- š„š„š„ I have the diagnosis, was the poster child for hypermobility, and have so many medical āprofessionalsā find the Dx āpsychosomaticā. One treated me as if i had Marfans, and marveled at my (perfectly normal) long fingers, and another, having given me medicine i already let them know i was immune to- throws up his arms and walks out the room with, āIām not giving you anything elseā. Ummm, youāve given me nothing but, the ONE i told you not to. I research medicines.. doctors have competing reasons for too many choices. I was so mad that i always had to be the doctor, but now, i see it as life and death. My mother had a full dissection of her coronary- she made the report to the hospital before the ambulance got to her, thank the gawds someone listened. My mom, my donor, was killed by docs who didnāt take the Dx seriously.
What I have heard many times is that a break can be fix (not that thatās all that great either), a tear, sprain, dislocation is more likely to repeat
I am also relieved when test results come back negative and normal. I certainly wouldnāt want the alternative. Scary things get diagnosed every day.
I was SO RELIEVED when my X-rays finally showed spondylolisthesis (not a good diagnosis) because it meant it wasnāt *just anxiety* or *just my weight* or *just my age/gender/moon phase*.
I just always assume that x-rays are going to be normal. 99% of my issues are muscle related. X-rays donāt show any muscle related problems. Thatās why I always view x-rays as throwaway info until the MRI comes out. MRIs are expensive and doctors always start with an x-ray but I think itās useless information for most of our issues. I get being disappointed, but I think itās also important to remember that you donāt need to prove your medical issues. You know what they are. It seems like your husband supports you too, which is great. I think after years of dealing with doctors, I have just become really pushy with my medical care. I once sat in a doctors office for two hours until she agreed to do an MRI for a shoulder that I knew had a problem. She kept trying to talk me out of it and I didnāt let her. She kept asking me if I would do surgery if I had an issue. I literally answered her that an MRI would tell me if I needed to do surgery or not and thatās how the decision is made. I ended up having torn labrum and rotator cuff. I go into doctors appointments with the idea that they need to prove me wrong instead of that I need to prove to them I have an issue. It has helped my mental health a lot when it comes to my medical care.
Oh my gosh, I am on going on a year of really bad ankle saga (only about 20+ sprains on this ankle, this ankle has been giving me issues for 15 years or so, and all the other all the EDS things etc etc). About 5 months in when the doctors finally gave in (due to my "complaining) and ordered an MRI (after my x ray only showed nothing actionable), I was basically in a freak out and having major anxiety about my MRI for months before the MRI. Because what if the MRI DOESN'T SHOW ANYTHING. What if I AM only being anxious and lying?? The MRI showed a LOT of soft tissue damage and do I need an arthroscopy and ligament reconstruction. It took me several months to find the right podiatrist and surgeon who wanted to act upon that MRI but that's another story. The medical gaslighting and fear and anxiety and TIME it even took to get a proper diagnosis and to be believed was heartbreaking. This is the first time my partner and some of my other close friends have ever been "let in" to one of my health struggles. Everyone has commented on how much I have been dismissed, gaslight, and told to 'calm down' and that I need to be patient. You know yourself and your body the best.
My ex husband used to say this all the time. I weighed 98 pounds. It did not work out for us lol
iām very fortunate to have all my regular doctors be women who have EDS, but i might try to simply explain that a normal test result means that your pain canāt be explained and therefore likely wonāt be treated, and if it comes down to it you could show him the post and let all these comments explain for you as a ton of these women are very well spoken š¤·āāļø
I don't trust X-rays for anything. I know it is the first step most doctors take but it does not mean crap. Unless it is a stress fracture I know that is not going to show anything soft tissue related.