klondike
Sapphire
OHIO
Posts: 4,412 Likes: 12,161
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Post by klondike on May 15, 2020 18:08:07 GMT -6
We haven't had one of these in a while and I don't want to word vomit in the drinking threads.
How is everyone doing? Even if you don't post, I hope you are doing well. I know this is an unfortunate time in our lives to have chronic health problems. Hopefully we can give advice when asked for and pick each other up when needed. Hugs to all.
I mentioned before that I need another cervical spine surgery and it's a bit urgent. I wanted to push it off because summer, neck brace & virus. More test results have rolled in and it looks like my immune system is going haywire. Super. Along with my current autoimmune disorder, it looks like I have added Hashimoto's and drug-induced lupus to the list. To treat the lupus, I would traditionally need to stop my medication, but I can't or I won't be able to function. I won't be able to move my arms, breathing & swallowing feel like my ribs are breaking, my achilles will flare so bad I can't walk without 2 boot casts and the list goes on. My primary doc wants me to get a covid antibody test as she thinks I could have been exposed and it caused my immune system to ramp up even more, but my rheumatologist doesn't think so since none of the 5 of us have been sick with even a cold in over a year. A team is looking at my situation. And I will need more testing. Yay! So even though I wanted to push back the surgery, it's not even on the table right now. I'm upset that the decision and possible relief has been taken out of my hands once again.
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Post by millimeter314 on May 15, 2020 19:59:49 GMT -6
I’m so sorry you’ve had so many troubles recently! I’m hoping the tests all come back ok and you can have the surgery as soon as you’d like.
I have interstitial cystitis that has been controlled with diet and massive amounts of water. I also have endometriosis that was removed in August and thankfully no issues with that right now. I’ve been losing a ton of hair, exhausted all the time (need a nap or two every day), and have super dry skin so I’m going through some testing. My thyroid levels were all fine but my iron was high so I see a hematologist June 1.
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Post by kittyriot on May 15, 2020 20:17:12 GMT -6
My love to everyone in here, thanks klondike for starting this, your posts earlier this week really helped me, so thank you. I am a walking autoimmune disaster. I was diagnosed with stage 4 endometriosis six years ago, fibromyalgia and osteoarthritis in my knees a year ago. At that time they were concerned I had either MS or lupus and were screening for that as well. In trying to figure out why my legs were going completely numb and tingling, they found evidence of degenerative disc disease in my lower spine. It’s the degenerative discs that had me flat on my back for two days this week. I’ve been having a rather intense care protocol with massage/chiro and physio (with additional support from my GP for the medical pain control) up until Covid working to manage the compression but since Covid I’ve only been able to see my chiro. I’m a mess and I’m really worried about what my MRI is going to show in the summer (dr’s in Canada have been told not to order non emergency tests right now). My rheumatologist was suggesting the next steps are referral to a surgeon, and it’s only getting worse. I know I can’t dwell on the worst, but some days my quality of life just sucks so much!! Once again, my love to all of you in similar spaces. This shit is hard, especially hard when you’re young.
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sudsy
Opal
Posts: 9,010 Likes: 50,560
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Post by sudsy on May 15, 2020 20:25:48 GMT -6
My arthritis is flaring like a mammer jammer. Hips are grinding. Every time I move my neck, my arms go numb. Stress + weather + running my ass off at work just makes everything worse.
On the plus side, it’s been 4 months since I’ve tried to go anaphylactic and die. 4 months since I had a horrible hive outbreak. And 2 months since I’ve had issues with my dermatographia. The medicine combo my allergist put me on seems to be helping!
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klondike
Sapphire
OHIO
Posts: 4,412 Likes: 12,161
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Post by klondike on May 16, 2020 8:19:05 GMT -6
millimeter314, GL with your appointment. I hope it's something simple to remedy and nothing serious. kittyriot, I'm sorry to hear you are having a rough week. sudsy, I forget where you are in the country, but this weather is definitely not helping on the arthritis front. Awesome news about the allergies though!
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beatch
Amethyst
My ass is self-sufficient
Posts: 7,072 Likes: 63,399
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Post by beatch on May 16, 2020 8:49:04 GMT -6
I'm going back to my endodontist next week because this goddamn tooth pain will not stop.
IDK what the solution is here. My dentist recommended shooting Botox in my jaw to settle my nerves and relax my jaw muscles but it was so expensive, and insurance wasn't going to help at all, so I rejected it. But I just can't take this pain anymore. I can't even chew normally.
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Minerva
Ruby
Posts: 15,381 Likes: 67,036
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Post by Minerva on May 16, 2020 9:14:53 GMT -6
I’m trucking along. I have hypermobility issues and have been tripping over my own feet, which has been frustrating. I sprained my ankle and knee a couple weeks ago just walking down a flat, paved path. I can feel my ankles and knees popping in and out of joint a lot. I have joint stability exercises to do, but quarantine has really thrown off my routine and access to the good machinery at the gym. I know I need to be better about making time to do them at home.
My hashimito’s and psoriasis are under control - the longer days and extra vitamin D this time of year is typically good for my autoimmune stuff. I’m due for an endocrinology appointment this month and have been putting it off because of COVID, but I’ll run out of meds if I don’t get my shit together to schedule it. Yay motivation?
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klondike
Sapphire
OHIO
Posts: 4,412 Likes: 12,161
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Post by klondike on May 16, 2020 9:16:20 GMT -6
Constant tooth pain is terrible. I'm sorry, beatch. I hope they are able to help you.
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gabbi
New
Posts: 57 Likes: 193
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Post by gabbi on May 16, 2020 23:46:30 GMT -6
My arthritis is flaring like a mammer jammer. Hips are grinding. Every time I move my neck, my arms go numb. Stress + weather + running my ass off at work just makes everything worse. On the plus side, it’s been 4 months since I’ve tried to go anaphylactic and die. 4 months since I had a horrible hive outbreak. And 2 months since I’ve had issues with my dermatographia. The medicine combo my allergist put me on seems to be helping! What med combo? I have dermatographia too!! It’s a bitch. I started xolair and it’s helped but always looking for other options.
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sudsy
Opal
Posts: 9,010 Likes: 50,560
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Post by sudsy on May 17, 2020 7:31:34 GMT -6
My arthritis is flaring like a mammer jammer. Hips are grinding. Every time I move my neck, my arms go numb. Stress + weather + running my ass off at work just makes everything worse. On the plus side, it’s been 4 months since I’ve tried to go anaphylactic and die. 4 months since I had a horrible hive outbreak. And 2 months since I’ve had issues with my dermatographia. The medicine combo my allergist put me on seems to be helping! What med combo? I have dermatographia too!! It’s a bitch. I started xolair and it’s helped but always looking for other options. Right now, I’m on a a regular antihistamine of my choice. I used Zyrtec forever but recently switched to Claritin because Zyrtec makes me super drowsy. I’m allowed to go up to 4 times the regular dose. Also on an H2 blocker of my choice. I was using Zantac forever, but switched to Pepcid because of the cancer concerns. Montelukast at night. I take Hydroxyzine as part of my anxiety drug regimen, but since that is an antihistamine too, it helps. And finally, emergency prednisone and Epi-pens. When I was just battling the dermatographia, Zyrtec is the drug of choice.
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Post by miawallace on May 17, 2020 9:43:10 GMT -6
Hi everyone. I feel like my good days vs bad days are getting better. That’s good news. I have a chronic liver autoimmune disease called pbc. My medication dose was recently adjusted because of weight gain. I still can’t lose the weight but I’ve stopped gaining. My labs in March came back normal for the first time in years. I met with my hepatologist recently and he recommended I consider an anti inflammatory diet, which means no dairy, gluten, refined sugars, among other things. So that’s where I am. Sad face. But I do feel like it’s helping. It’s doable.
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Post by CestLaVie on Jan 19, 2021 11:59:18 GMT -6
I am bumping this thread after my dr appt this morning to ask a few questions. I will be getting a biopsy done for celiac, anyone know if this hurts? My blood test was negative but borderline. Anyone have any experience with it? I got rescue meds for the IBS today although if it is celiac than it probably isn't actually IBS. anyway I don't think it will be celiac due to the blood tests but it's getting frustrating, I just wanna be like.... what is wrong with me?!
Anyway I have had a miserable start to the year so I thought I would see where other people are at, how are you doing?
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gingy
Opal
Posts: 7,643 Likes: 35,341
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Post by gingy on Jan 20, 2021 8:59:10 GMT -6
CestLaVie, I haven't gone through that, but I'm sorry you're dealing with it. Hoping for good things based on the blood tests. I had my biannual rheum visit Monday. She ran a fuck ton of labs to figure out what's going on with my skin. Her thought is antiphospholipid syndrome, which sounds not fun at all. But basically all of my skin is red and blotchy 24/7, so something isn't right.
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Post by lucilleaustero on Jan 20, 2021 9:25:34 GMT -6
I am bumping this thread after my dr appt this morning to ask a few questions. I will be getting a biopsy done for celiac, anyone know if this hurts? My blood test was negative but borderline. Anyone have any experience with it? I got rescue meds for the IBS today although if it is celiac than it probably isn't actually IBS. anyway I don't think it will be celiac due to the blood tests but it's getting frustrating, I just wanna be like.... what is wrong with me?! Anyway I have had a miserable start to the year so I thought I would see where other people are at, how are you doing? My brother was diagnosed celiac through the biopsy as his blood tests were not clear indicators. His biopsy was not bad, hurt a little for a day. This was over 15 years ago, so I imagine it is even better now.
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Tlex
Ruby
Posts: 22,759 Likes: 154,991
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Post by Tlex on Jan 20, 2021 10:57:21 GMT -6
My bloodwork came back somewhat elevated for indicators of auto immune disease so I’m being referred to a Rheumatologist (I think?) for further evaluation. We’re trying to find the source of my chronic back pain. I’m also going to get an MRI, my xrays confirmed degenerative scoliosis of my SI. I’m kind of hopeful the auto immune path leads to an answer, but then also don’t want that at all. CestLaVie I hope your biopsy goes well and doesn’t hurt
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jenna
Platinum
Posts: 1,338 Likes: 5,928
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Post by jenna on Jan 20, 2021 23:50:36 GMT -6
I am bumping this thread after my dr appt this morning to ask a few questions. I will be getting a biopsy done for celiac, anyone know if this hurts? My blood test was negative but borderline. Anyone have any experience with it? I got rescue meds for the IBS today although if it is celiac than it probably isn't actually IBS. anyway I don't think it will be celiac due to the blood tests but it's getting frustrating, I just wanna be like.... what is wrong with me?! Anyway I have had a miserable start to the year so I thought I would see where other people are at, how are you doing? The biopsy is painless, it felt like I took a nap and it was over. Do you know which blood test you had done? And you’re still eating gluten at this point right? I was diagnosed in 2016 so if you have any questions feel free to ask. I hope you get answers soon.
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Post by wickedcandy on Jan 21, 2021 8:34:32 GMT -6
I have a phone appointment with the liver specialist, to go over the results of the ultrasound and fibroscan ( where they measure the scarring on your Liver) so that should be interesting.. And I should be getting a letter for next kidney appointment soon.. I'm also trying to find out if I would qualify to get the Covid vax earlier (if Canada ever gets enough doses )
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Post by CestLaVie on Jan 21, 2021 9:55:28 GMT -6
I am bumping this thread after my dr appt this morning to ask a few questions. I will be getting a biopsy done for celiac, anyone know if this hurts? My blood test was negative but borderline. Anyone have any experience with it? I got rescue meds for the IBS today although if it is celiac than it probably isn't actually IBS. anyway I don't think it will be celiac due to the blood tests but it's getting frustrating, I just wanna be like.... what is wrong with me?! Anyway I have had a miserable start to the year so I thought I would see where other people are at, how are you doing? The biopsy is painless, it felt like I took a nap and it was over. Do you know which blood test you had done? And you’re still eating gluten at this point right? I was diagnosed in 2016 so if you have any questions feel free to ask. I hope you get answers soon. that's good to know. I have no idea except that she did it twice and ended up saying negative. I had been gluten free for 2 years and then in the summer I started eating it again, so I've been eating gluten for about 6 months now.
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jenna
Platinum
Posts: 1,338 Likes: 5,928
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Post by jenna on Jan 21, 2021 18:09:33 GMT -6
The biopsy is painless, it felt like I took a nap and it was over. Do you know which blood test you had done? And you’re still eating gluten at this point right? I was diagnosed in 2016 so if you have any questions feel free to ask. I hope you get answers soon. that's good to know. I have no idea except that she did it twice and ended up saying negative. I had been gluten free for 2 years and then in the summer I started eating it again, so I've been eating gluten for about 6 months now. Ah okay. If you were already GF that could cause a false negative too which is why I asked.
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addymac
Emerald
Posts: 12,693 Likes: 54,081
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Post by addymac on Jan 21, 2021 19:23:25 GMT -6
My bloodwork came back somewhat elevated for indicators of auto immune disease so I’m being referred to a Rheumatologist (I think?) for further evaluation. We’re trying to find the source of my chronic back pain. I’m also going to get an MRI, my xrays confirmed degenerative scoliosis of my SI. I’m kind of hopeful the auto immune path leads to an answer, but then also don’t want that at all. CestLaVie I hope your biopsy goes well and doesn’t hurt Oh hi, me. Going Feb 1 to the Rheum after ignoring my results for over a year and finally admitting I should figure out shit about my chronic pain- used to just be back but now I have pain that pulsates down my arms to my finger tips, insane hip pain, and constant muscle pains. My body is FUN.
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Post by bustedbiscuits on Jan 21, 2021 20:48:38 GMT -6
Sending everyone good thoughts and vibes that are struggling.
I'm starting to feel in a better place. I was feeling ill, brain fog, and so tired. I found a doctor that worked with me and found that I was being over medicated on my migraine medication. Cutting the dose in half, I feel so much better mentally and can focus again. I'm just glad it isn't my thyroid. I was worried but all my labs came back fine.
It's winter so my arthritis is acting up. I've started working out again slowly but I fear it might be time for a mixture of something more to help me manage to pain and extreme stiffness. Anyone have arthritis and how are you managing? I have it in my lower back, I do core exercises to try to strengthen the area but now it doesn't seem like enough.
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sctiger
Platinum
Posts: 1,193 Likes: 9,281
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Post by sctiger on Jan 21, 2021 21:23:32 GMT -6
I am bumping this thread after my dr appt this morning to ask a few questions. I will be getting a biopsy done for celiac, anyone know if this hurts? My blood test was negative but borderline. Anyone have any experience with it? I got rescue meds for the IBS today although if it is celiac than it probably isn't actually IBS. anyway I don't think it will be celiac due to the blood tests but it's getting frustrating, I just wanna be like.... what is wrong with me?! Anyway I have had a miserable start to the year so I thought I would see where other people are at, how are you doing? I was diagnosed with celiac in 2008. The biopsy was really simple for me. I actually had a colonoscopy at the same session. Once they put me to sleep I didn't feel anything and then woke up a little groggy but was fine. I took a nap when I got home and then was good to go. I hope you can figure it out! I know how frustrating it is to feel like crap and not have answers.
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Post by karabear on Jan 22, 2021 7:36:52 GMT -6
CestLaVie, I haven't gone through that, but I'm sorry you're dealing with it. Hoping for good things based on the blood tests. I had my biannual rheum visit Monday. She ran a fuck ton of labs to figure out what's going on with my skin. Her thought is antiphospholipid syndrome, which sounds not fun at all. But basically all of my skin is red and blotchy 24/7, so something isn't right. Hiiii. I have APS. It sounds like you have a doctor who is knowledgeable about the symptomatic side of APS, which is great! I was diagnosed 11 years ago, and my mom and aunt both have it too. The first doctors I saw treated it more as just a clotting disorder that caused clots and pregnancy issues, but they’ve come a long way in that time. They are recognizing it much more as an autoimmune disorder now with its own symptoms. I take a blood thinner every day. I know some people are also prescribed plaquenil. Let me know if you have any questions or want to chat!
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gingy
Opal
Posts: 7,643 Likes: 35,341
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Post by gingy on Jan 22, 2021 8:03:14 GMT -6
CestLaVie , I haven't gone through that, but I'm sorry you're dealing with it. Hoping for good things based on the blood tests. I had my biannual rheum visit Monday. She ran a fuck ton of labs to figure out what's going on with my skin. Her thought is antiphospholipid syndrome, which sounds not fun at all. But basically all of my skin is red and blotchy 24/7, so something isn't right. Hiiii. I have APS. It sounds like you have a doctor who is knowledgeable about the symptomatic side of APS, which is great! I was diagnosed 11 years ago, and my mom and aunt both have it too. The first doctors I saw treated it more as just a clotting disorder that caused clots and pregnancy issues, but they’ve come a long way in that time. They are recognizing it much more as an autoimmune disorder now with its own symptoms. I take a blood thinner every day. I know some people are also prescribed plaquenil. Let me know if you have any questions or want to chat! Thank you! I'm already on plaquenil for lupus. She mentioned blood thinners, possibly only aspirin depending on symptoms. I'm anxiously waiting for lab results. They should be up soon.
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Post by karabear on Jan 22, 2021 8:25:25 GMT -6
Hiiii. I have APS. It sounds like you have a doctor who is knowledgeable about the symptomatic side of APS, which is great! I was diagnosed 11 years ago, and my mom and aunt both have it too. The first doctors I saw treated it more as just a clotting disorder that caused clots and pregnancy issues, but they’ve come a long way in that time. They are recognizing it much more as an autoimmune disorder now with its own symptoms. I take a blood thinner every day. I know some people are also prescribed plaquenil. Let me know if you have any questions or want to chat! Thank you! I'm already on plaquenil for lupus. She mentioned blood thinners, possibly only aspirin depending on symptoms. I'm anxiously waiting for lab results. They should be up soon. I believe they typically just prescribe aspirin if you haven’t had a clot before. Then a stronger blood thinner if you have. I’ll be thinking about you! Edit - you may have read about this, but lupus and APS go hand in hand. I don’t remember the statistic, but a significant portion of people with APS also have lupus.
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gingy
Opal
Posts: 7,643 Likes: 35,341
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Post by gingy on Jan 22, 2021 8:44:36 GMT -6
Thank you! I'm already on plaquenil for lupus. She mentioned blood thinners, possibly only aspirin depending on symptoms. I'm anxiously waiting for lab results. They should be up soon. I believe they typically just prescribe aspirin if you haven’t had a clot before. Then a stronger blood thinner if you have. I’ll be thinking about you! Edit - you may have read about this, but lupus and APS go hand in hand. I don’t remember the statistic, but a significant portion of people with APS also have lupus. That makes sense about the aspirin. It's so interesting how autoimmune diseases come in groups. I have two others, Sjogren's and MCTD. But no one else in my family has any to their knowledge.
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Post by treeofheaven on Feb 5, 2021 6:47:03 GMT -6
Bumping this thread because I saw my RA for the first time yesterday. None of the tests for specific AIs came back positive, but I have several symptoms that are leading the RA to think it's lupus, and my GFR was 56.2. I had some follow up blood work and have to submit a urine sample next week to check for blood/protein. I see him again in two weeks and in the meantime I started 20mg of prednisone for joint pain. He talked about the possibility of having to see a kidney specialist which has me worried.
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Post by treeofheaven on Feb 5, 2021 6:47:50 GMT -6
Also, I am a new version of a frequent poster 😉.
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gingy
Opal
Posts: 7,643 Likes: 35,341
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Post by gingy on Feb 5, 2021 8:25:17 GMT -6
treeofheaven sorry you didn't get clear answers. I hope the prednisone helps. It's usually the magic bullet for me.
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gingy
Opal
Posts: 7,643 Likes: 35,341
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Post by gingy on Feb 5, 2021 8:26:26 GMT -6
My labs came back as decidedly not APS. Everything is "normal," except it's not. I made an appointment with my derm to see if he has any ideas. I'm just really fucking tired of 2/3 of my body being bright red all the time. I look diseased.
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