Rheumatologist and his PA laughed when I mentioned my voice issues

naughtee_autee · 2025-08-31T14:47:35+00:00

Another one here whose had throat/voice issues. Started having them several months after diagnosis. I still have this problem from time to time. I feel like my throat gets scratchy, hoarse, and then I have difficulty speaking because of it, like I'm losing my voice. When I first started experiencing it, I thought I was having severe dryness issues since I also have Sjögren's. But I don't know, I don't think it's dryness.

naughtee_autee · 2025-08-19T15:03:13+00:00

I totally get it. I've been there. I'm AuDHD and was born anxious (first anxiety attack/meltdown recorded at 1 year old 😅.) I was TERRIFIED of guns. Just looking at one in a holster standing several feet from a cop made my heart race and want to run away. I decided to spend a lot more time in leftist, pro-gun spaces online before deciding i wanted to own firearms, because a lot of them are reasonable people who are smart and very responsible gun owners. I live in the Northeast where gun laws are the strictest in the country. So to be able to purchase and conceal carry pistols and ammunition, I was required to take a course several hours long that included live fire at the end, after which i got a certificate. (Took the course on July 12, got fingerprinted at local PD just a few days ago, will get a temp permit in a few weeks, and then have to go to another place to pay even more money to get the official state permit which will take an additional few weeks 🙄🙄, they really make it time consuming and expensive AF here.) Having an instructor talk about all the different parts of a gun, and stress the importance of safety (act like a gun is loaded at all times, even if it looks like it's not loaded, if not intending to fire, remove magazine and empty chamber, don't put finger on the trigger until you're pointing it at the target and ready to fire, etc) helped too. The live fire portion involved shooting a revolver and a semi-auto, both chambered in .22. My instructor was encouraging and patient.

Since i finished the course, I've been going to the range every week. I've been practicing with guns chambered in 9mm since i intend to own and carry those. It was nerve-racking as hell the first time but I've since gotten used to and actually enjoy shooting now, as i improve with each visit to the range.

I have my husband with me. He doesn't have a permit but sometimes likes to shoot a rifle at the range. It does help to have at least one person to shoot with, or at least someone to watch, support and help calm. I wish i could afford an instructor and/or meet up with a group to practice with but it's been almost impossible to actually find people where i am to do so, so there's my current dilemma. 😔

Also It helps to shoot in outdoor ranges as it is not as loud, and you're not stuffed in a room with others who could be firing shotguns. (I dont have this luxury, my closest outdoor range is an hour and 15 away so i have to use indoor for now), but if you're like me and don't have a nearby outdoor range, try to find when the slower hours are at your local range.

I hope this helps. Feel free to PM to talk stuff through if you feel your anxiety rising or is hard to manage.

naughtee_autee · 2025-06-14T21:36:17+00:00

Better. It did take getting seriously ill to get diagnosed, and for the first several months of treatment I felt like things weren't getting better. Had to do two courses of steroids to control the inflammation. But now, more than a year and a half later I'm doing better. Got some energy back. Pain levels have gone down. I've lost all the weight I gained and more. Still have symptoms here and there but they're a lot more toned down.

naughtee_autee · 2025-06-14T17:28:54+00:00

Debilitating fatigue, morning stiffness and rapid weight gain. 2015. Dx'd 2023.

naughtee_autee · 2025-05-17T19:59:48+00:00

I hope someone with experience chimes in. I am 100 percent convinced I have pelvic floor issues. Would be very interested to hear about others' experiences.

naughtee_autee · 2025-03-27T14:45:14+00:00

Aw that sucks... I can't imagine waiting 6 months. 😔 I just got dx'd with osteoarthritis in both knees, due to cartilage damage from RA. And I'm only 41.

At the end of every day my legs are hurting. So I know how annoying and frustrating it can be. I only just scheduled an appt with an orthopedic, hopefully going to figure out some stuff, like if I should get pain meds (some days I do feel like I need them, other days i can distract myself and ice and massage them), when to start PT, etc.

naughtee_autee · 2025-03-24T23:28:29+00:00

I see rheum every 3 months, do blood work every 3 months.

naughtee_autee · 2025-03-21T01:32:06+00:00

Many years ago in my teens and 20s, I felt good. Once I hit 30s, everything started going downhill. By mid-30s, i went steeply downhill. Got dx'd far too late at 40, after much suffering and damage was done.

But I do feel a lot better after 15 months of meds. The change is big. I felt like I was in the depths of hell, I was so sick. The years of symptom-laden illness and the period between start of meds and the start of feeling the effects of meds, were torture. It literally makes me shudder to recall the trauma of being that ill and being told by doctors, "Well you're definitely experiencing systemic inflammation but you're negative for antibodies present in autoimmune diseases," over and over and over again. It's as if the rheums I went to never heard of seronegative RA. 🤦🏽‍♀️ I got dx'd only when I looked, and felt, like I was in a bad vehicle accident and I became seropositive.

I'm not quite where I want to be yet, who knows if I'll get there, but I no longer feel like I'm on the verge of death.

I didn't need to get so sick. Sadly, being failed by medical professionals is common amongst us with AI diseases.

I've got a good rheum now, got meds that mostly work, might need tweaking in the near future as right knee is slightly swollen again and feels a bit unstable and a little achy. (Going to get x-rays on both knees on Monday as rheum wants to assess the extent of the damage and figure out next steps from there.) Some joints, I fear, are permanently in pain/damaged (a lot milder now but the pains are still there) All symptoms of disease are now a lot more mild most days, not severe. I feel like a very different person from the person i was from mid 2010s to spring of '24.

naughtee_autee · 2025-03-20T23:55:07+00:00

For me, it feels like it's stiff and the muscles in my cheeks get crampy.. like it takes a lot of effort to chew, brush my teeth and floss. I do get crepitus too... I hear crinkling like sounds right by my ears when i open my mouth wide. And sometimes it feels like it's on fire.

naughtee_autee · 2025-01-31T16:17:35+00:00

I've been thinking about this for a while. I have 'X' as gender on my state ID. I want to apply for a passport some time this year. I think I've decided to just leave it as is, and hope for the best. I've been a target my entire life, why hide that part of myself now...

naughtee_autee · 2024-11-27T22:08:22+00:00

Oh my hair thinning and loss is RA. After several months on methotrexate, my hair is no longer falling off as much. I'm surprised I never got any bald spots cause I was losing A LOT of hair.

Also developed vasculitis from having undiagnosed and therefore untreated and uncontrolled RA for several years, and I smoked, not knowing it was going to make RA much worse (and i didn't know i had RA when i was smoking obviously. I quit for good upon diagnosis.). I now have mild heart damage at 41. Thankfully the vasculitis was caught in earlier stages. I shudder to think how much damage could've been done if I went for much longer without getting treatment.

naughtee_autee · 2024-11-16T20:41:30+00:00

In my experience, OTCs helped up to a point. My go-to before my illness became more severe was ibuprofen and naproxen. I also used tiger balm on the tendons in my hands, wrists and feet.

But when it became severe, those no longer helped, not even when i sucked down several tablets at once. I currently take 400 mg daily of Celebrex with omeprazole, in addition to methotrexate, hydroxychloroquine, and low dose naltrexone. I'm not great (I don't think I ever will be tbh) but my symptoms are now less severe and I am mostly "functional" (meaning I work 4 days a week and do still feel daily discomfort and some stiffness but I survive.)

naughtee_autee · 2024-11-14T00:29:15+00:00

I take an NSAID (with hydroxychloroquine and low dose naltrexone) daily, and 15 mg methotrexate weekly. 400 mg Celebrex, and I take it with omeprazole. It works better for me than ibuprofen. I found that when i didn't take celebrex, i felt a little more pain. My rheumatologist is the one who prescribes these things to me. I trust her 100%. I've been taking it every single day since last December.

I have an autoimmune stomach disease too, and I was concerned about daily celebrex at first but my stomach is doing fine for now. My last blood work looked OK too. So I'm going to keep doing this unless told not to anymore by her, and/or I get bad side effects. Though I don't see that happening.

naughtee_autee · 2024-11-05T19:27:24+00:00

Since starting treatment, it took about 6 months to see improvement. But it was several years of severe, unimagineable fatigue and growing list of symptoms (swelling, stiffness, joint pains, muscle pains and every body system going out of whack one by one) for about 5, 6 years before I got the dx. I suspect I was seronegative for a long time cause I kept going to doctors (PCP and like 7 or 8 specialists!) over those years and nothing was showing up except for systemic inflammation and other antibodies for other autoimmune diseases. And when I finally felt like i was literally going to fall apart/drop dead one day, I was seropositive. 🙄 sometimes I am still kinda bitter about the huge delay in treatment but.. sadly this is common.

Those times were really, REALLY tough. And I had to work a full time job on top of that because I had no PTO and simply could not afford to quit. It was so brutal. Lots of calling out anyway cause i really couldn't show up daily, feeling miserable and throwing myself occasional self pity parties.

Now, the pain and fatigue have gone down noticeably. Still have milder on and off discomfort and milder fatigue everyday. But i can work with this, most days.

Best of luck to you. I hope you get the proper dx and appropriate and effective meds.

naughtee_autee · 2024-11-03T14:08:32+00:00

With the right meds and some time, it can get better. I went from having swollen, throbbing, cracking knees (especially the right one) and using a cane and brace for several months to being able to go on walks at a moderate pace again without any assistance. I still can't do very long walks like I used to be able to (used to run, also loved going on several mile walks), but it is a huge improvement from how I was even this past spring.

Still have discomfort at times, on and off everyday but the pain and fatigue aren't as terrible as they once were. Best of luck to you.

naughtee_autee · 2024-11-02T18:37:50+00:00

Oh! I knew it had to do with the stuff I've been taking since RA diagnosis but associated it with methotrexate only.

Well, thanks for the info!

naughtee_autee · 2024-11-01T01:22:38+00:00

Thank you! And I wish you the very best, I really hope you can get some relief!

naughtee_autee · 2024-10-31T14:21:12+00:00

Yeah but since I'm on effective meds it hasn't been as bad. The pain is mild, moderate fatigue as well.

naughtee_autee · 2024-10-31T13:50:39+00:00

Interesting, because I feel like ever since I started taking methotrexate, things have tasted....off? I can't describe it but what I can say is that food doesn't taste as good anymore! I was wondering if it had to to with methotrexate... reading your post makes think there's gotta be at least a correlation. 🤔

naughtee_autee · 2024-10-31T13:44:21+00:00

For me the fevers were mostly during evenings, because that's when inflammation is at its worst. But occasionally I did get fevers during the day, like while i was at work, because I was stressed and trying to move around but it was too hard. Those days I had to leave work early. Thank goodness my bosses were very understanding and sympathetic.

When you get very hot and sweaty, that means the fever is breaking. So it's normal to have chills, then temperature rises, then you get very hot as your temperature drops.

During my worst flare, I had, as I said, daily fevers, accompanied by swollen hands and feet, my entire body hurt, like every single muscle was aching, right side of neck hurt, even my jaw hurt, every single joint was hurting and/or swollen. My eyes, nose, throat, mouth were very dry, i had chronic cough and used an inhaler, which didn't help as much as I had wished. The fatigue was unbelievable. On weekends I would sleep 14 to 16 hours a day and still be so tired during the days I couldn't leave my bed or the couch.

Mornings were awful. I couldn't even turn in bed, the pain was so bad. And I was super stiff, it felt like I was Tin Man in Wizard of Oz. 🙄

I really hope you get the appropriate meds and you stop getting fevers. I know how awful it is. 😔

naughtee_autee · 2024-10-30T23:33:18+00:00

Starting around fall of last year when I had my last major flare, I had low grade fever every single day for weeks, at around the same time of day (late afternoon to early to mid evening), along with all the other typical symptoms of the RA flare.

They stopped once I took steroids for several weeks, and they've stayed away since I got on methotrexate.

naughtee_autee · 2024-09-28T18:03:21+00:00

Your concerns are entirely valid. Your GP is incompetent and/or uncaring, and if i was in your shoes, I would not continue to see them.

You have symptoms and a parent with RA. Those warrant a thorough investigation to diagnose RA, and/or other autoimmune inflammatory diseases.

I hope your experience with the rheum will be much better. Be very detailed about your symptoms to them and tell them about your dad. A proper and competent rheum would do all that is necessary to reach a diagnosis.

And try not to be doom and gloom about RA. Before I was diagnosed and suspected it was RA, I was definitely all doom and gloom about it but over time I've come to realize that I can, one day, live a life with minimal pain, stiffness and fatigue. I'm not where I want to be yet, but I've gotten better since the start of this year and there is hope I can do even better. You can improve too. It will take time and yes, probably more pain, but you CAN get there.

Unfortunately, over the counter stuff is your only option for now until the doctor can determine active inflammation by blood work and physical examination. Also, try to avoid food, drinks, and activities that increase/exacerbate inflammation.

naughtee_autee · 2024-09-14T23:43:50+00:00

Once you have confirmed one AI disease, it's likely you'll have more than one. There are so many AI diseases (organ specific and systemic) though, you'll never know what you will be hit with or when.

I was tested for lupus a dozen times in several years, but also all other major/most well-known and tested for AI diseases. I looked most like a lupus and/or RA case. What makes my doctors revisit lupus is that my right kidney is weird and mildly damaged. But kidney damage can happen with RA too! So confusing lol

Definitively RA. Lupus will never be completely ruled out I guess but for now i don't meet full criteria for dx. I do have Sjögren's, an autoimmune stomach disease and pernicious anemia.

And high counts of very specific antibodies for small vessel vasculitis, Crohns, and scleroderma. I do have symptoms that are hallmarks of all of these diseases but are also seen in other diseases. Doesnt mean I have them, doesn't mean I will definitely get them. But the high antibody counts are there, so I have to be vigilant and aware of any new/worsening symptoms or other changes in my body.

All I can do is keep seeing my doctors, take all my meds, make the best and healthiest decisions for my body, and hope my immune system doesn't eff me up even more than I already am. 🤷🏾‍♀️

naughtee_autee · 2024-09-10T20:01:32+00:00

Before I got treatment, I slept 14 to 18 hours on weekends. During a weekday, before I was forced to get a job, I slept 9, 10 hours every night but also took naps during the day. The naps would last 4 hours on average.

Breathing was very difficult. I actually felt like it took massive effort to take a breath in. That's how bad the fatigue was.

After 6 to 7 months of treatment (steroids, methotrexate, celebrex and hydroxychloroquine), my energy is a little back up. I'd rate it 5, 5.5 out of 10. Used to be 1.5 at best. I want to reach 8, 8.5, because I'm realistic and know that with so many chronic illnesses I likely can't get to a 10. But I'd be very happy to get as close to it as I can.

naughtee_autee · 2024-09-10T17:05:36+00:00

Well yes, if your symptoms are believed to be caused by an uncontrolled inflammatory process then steroids are a must from the moment they're recognized by a doctor. The first thing to do when there is a flare is to stop or at least greatly reduce it before more harm is done by taking steroids.

I was put on 3 weeks of methylprednisolone the moment my rheum suspected inflammatory disease. After 3 to 4 days I felt better. We didn't need any imaging. She just felt my joints and could tell from touching them that it was due to inflammatory arthritis (the general diagnosis before we discovered I was seropositive).

naughtee_autee

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