willow
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Post by willow on Apr 12, 2024 12:27:03 GMT -6
willow I'm lurking here but I work at a ketamine clinic and it is such an effective and versatile tool. Depression, PTSD, chronic pain, OCD, the list goes on and on. I'm so glad it was effective for you, and I encourage anyone suffering from any of those issues to consider it as a treatment option. I was very hopeful before I started and I was actually surprised with how successful it has been. I've been able to stop using medical cannabis completely (I used to have to ingest a ton of it every night to fall asleep and lessen nightmares) for 2 months now. Instead I just use magnesium pills before bed and that plus my infusions and my sleep has improved dramatically. And my general day to day outlook no longer has the veil of sadness and nerves that was there before. I can manage my anxiety better and I'm not as depressed constantly. I want everyone to get ketamine so they can feel this way. |
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brux
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Post by brux on Apr 12, 2024 13:47:33 GMT -6
AmyG, I hope something shakes loose and that you get some prolonged relief of all your symptoms. That has to be mentally taxing, not to mention financially and physically.
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trueblue
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Post by trueblue on Apr 14, 2024 7:06:47 GMT -6
trueblue I know how hard it is to watch your scales creep up. I'm sad you are stuck with subpar specialists. What does your primary dr think? Can they help you see the bigger picture if some is perimenopause? I see a large practice with embedded specialists so primary doesn’t say much about my thyroid and recommended their dietician and study confirmed that I know the right stuff to eat, so I got a referral to their therapy group to talk about whatever was causing me to choose unhealthy choices over healthy ones (which I declined). I am also not interested in hormone replacement if it is perimenopause so…i could be part of the problem. IDK. |
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Post by AnnPerkins on Apr 14, 2024 10:33:45 GMT -6
miawallaceSorry about 6 week flare. That really sucks. Glad your liver seems OK. But you need a biopsy? My mom had a liver biopsy once and still complains about it but that may just be my mom 🤔 I keep hearing such different experiences for that. Some people say it’s NBD and other say it is. I don’t know. I was told to just take it easy that week. But ::::stares at kids::::: 😂 When the guy stabbed me with the biopsy needle I loudly shouted, "Fuck!" And he and the tech laughed heartily. It feels like they are sucking out a piece of your liver. They have to apply pressure after to staunch the bleeding and that kind of made me want to throw up/pass out. But, recovery was pretty easy...other than the kidney stone I got, but I'm 99% that's just a me thing. |
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miawallace
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Post by miawallace on Apr 14, 2024 10:38:25 GMT -6
I keep hearing such different experiences for that. Some people say it’s NBD and other say it is. I don’t know. I was told to just take it easy that week. But ::::stares at kids::::: 😂 When the guy stabbed me with the biopsy needle I loudly shouted, "Fuck!" And he and the tech laughed heartily. It feels like they are sucking out a piece of your liver. They have to apply pressure after to staunch the bleeding and that kind of made me want to throw up/pass out. But, recovery was pretty easy...other than the kidney stone I got, but I'm 99% that's just a me thing. I’ve been on Reddit trying to find detailed info of the procedure, so thank you. How long did it last? How long were you at the hospital? My appointment is at 9am. I’m predicting I’ll be out by 1-3pm? Is that accurate? |
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Post by AnnPerkins on Apr 14, 2024 12:02:56 GMT -6
When the guy stabbed me with the biopsy needle I loudly shouted, "Fuck!" And he and the tech laughed heartily. It feels like they are sucking out a piece of your liver. They have to apply pressure after to staunch the bleeding and that kind of made me want to throw up/pass out. But, recovery was pretty easy...other than the kidney stone I got, but I'm 99% that's just a me thing. I’ve been on Reddit trying to find detailed info of the procedure, so thank you. How long did it last? How long were you at the hospital? My appointment is at 9am. I’m predicting I’ll be out by 1-3pm? Is that accurate? I went in around 9a, but the hospital was running behind, so I wasn't seen until close to 1p. Not being able to eat or drink before coming in and during the wait was annoying. They gave me an IV after checking-in to make blood draws easier and administer meds if needed. There was an initial blood draw to make sure my blood would clot well. After that, I just hung out with H in triage until they were ready for me. After going back, the radiologist did an ultrasound to find my liver and marked my abdomen where he was going to put the needle with a sharpie. He injected a local anesthetic in that spot which stung going in and, honestly, I don't think it did much. He was kind enough to narrate what he was doing and gave me plenty of warning before doing anything. The actual biopsy is very unpleasant, but thankfully only lasts about 30 seconds. The needle is jammed into your liver and slurps a piece out. They put pressure on the site for about 5 min which, as I said before, wasn't great either. But overall, it took about 10 min from the ultrasound to me leaving the procedure room. Then I just sat in the triage area for an hour or so to be sure I didn't bleed out, which is the main risk I guess. H had to leave to get the kids from school and wasn't back by the time I could leave, so they gave me a box lunch and just let me chill until he could get me around 3p.y I was a little sore the first 24hrs, but felt fine after. The kidney stone was just unfortunate timing by my body. |
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AmyG
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Post by AmyG on Apr 17, 2024 13:38:26 GMT -6
AmyG , I hope something shakes loose and that you get some prolonged relief of all your symptoms. That has to be mentally taxing, not to mention financially and physically. Pain dr clinic has scheduled me for another piriformis injection May 2 with evaluation of ischiogluteal bursitis as well. GYN dr I can't see until first available is July (they have NO cancellation list but I can call back weekly to see if there's an earlier appt) Messaging she thinks if I can get piriformis injection before the botox wears off on muscles that it's relaxed with pelvic pt work to work on way back pelvic muscles that still have tight trigger points maybe it will all quit with the tug of war fight going on. I'm trying to be optimistic |
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AmyG
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Post by AmyG on Apr 17, 2024 13:40:19 GMT -6
trueblue, yeah I definitely didn't want hormone therapy for menopause symptoms but knowing where I stood was mentally reassuring. I think you need new dr group but I know how hard that may be to come to fruition.
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Eagles
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Post by Eagles on Apr 17, 2024 21:38:49 GMT -6
AmyG , I hope something shakes loose and that you get some prolonged relief of all your symptoms. That has to be mentally taxing, not to mention financially and physically. Pain dr clinic has scheduled me for another piriformis injection May 2 with evaluation of ischiogluteal bursitis as well. GYN dr I can't see until first available is July (they have NO cancellation list but I can call back weekly to see if there's an earlier appt) Messaging she thinks if I can get piriformis injection before the botox wears off on muscles that it's relaxed with pelvic pt work to work on way back pelvic muscles that still have tight trigger points maybe it will all quit with the tug of war fight going on. I'm trying to be optimistic You probably mentioned this but did you have a lumbar MRI? You'd be amazed what trouble a herniated disc can cause (including something serious called cauda equina which affects pelvic floor function) and sciatic nerve root irritation ties into piriformis syndrome. |
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AmyG
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Post by AmyG on Apr 17, 2024 22:07:56 GMT -6
Pain dr clinic has scheduled me for another piriformis injection May 2 with evaluation of ischiogluteal bursitis as well. GYN dr I can't see until first available is July (they have NO cancellation list but I can call back weekly to see if there's an earlier appt) Messaging she thinks if I can get piriformis injection before the botox wears off on muscles that it's relaxed with pelvic pt work to work on way back pelvic muscles that still have tight trigger points maybe it will all quit with the tug of war fight going on. I'm trying to be optimistic You probably mentioned this but did you have a lumbar MRI? You'd be amazed what trouble a herniated disc can cause (including something serious called cauda equina which affects pelvic floor function) and sciatic nerve root irritation ties into piriformis syndrome. Yes I've had lumbar mri with nothing remarkable. |
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Eagles
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Post by Eagles on Apr 18, 2024 7:25:24 GMT -6
You probably mentioned this but did you have a lumbar MRI? You'd be amazed what trouble a herniated disc can cause (including something serious called cauda equina which affects pelvic floor function) and sciatic nerve root irritation ties into piriformis syndrome. Yes I've had lumbar mri with nothing remarkable. I was having basically crotch pain at one point in PT - the only way I can describe it is the feeling of slipping on a bike and hitting the crossbar (every female nurse and MRI tech I talked to knew exactly what I meant) and I needed a pelvic MRI in addition to the lumbar to rule out nerve entrapment. Obviously, it's really expensive and I know you're already fighting with your insurance which is exhausting on top of being in constant pain and nothing working. |
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AmyG
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Post by AmyG on Apr 19, 2024 19:52:58 GMT -6
Yes I've had lumbar mri with nothing remarkable. I was having basically crotch pain at one point in PT - the only way I can describe it is the feeling of slipping on a bike and hitting the crossbar (every female nurse and MRI tech I talked to knew exactly what I meant) and I needed a pelvic MRI in addition to the lumbar to rule out nerve entrapment. Obviously, it's really expensive and I know you're already fighting with your insurance which is exhausting on top of being in constant pain and nothing working. None of my docs think I need an mri or further testing of pelvic hip butt since I've had an xray and symptoms they don't think it can be anything else, except they keep saying well it's also probbly this. so idk. I think I need a pelvic/hip/hamstring covering mri, and nerve tests to see how bad the entrapment/compression is of the sciatic nerve and now the peroneal nerve. |
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Eagles
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Post by Eagles on Apr 20, 2024 8:30:56 GMT -6
I was having basically crotch pain at one point in PT - the only way I can describe it is the feeling of slipping on a bike and hitting the crossbar (every female nurse and MRI tech I talked to knew exactly what I meant) and I needed a pelvic MRI in addition to the lumbar to rule out nerve entrapment. Obviously, it's really expensive and I know you're already fighting with your insurance which is exhausting on top of being in constant pain and nothing working. None of my docs think I need an mri or further testing of pelvic hip butt since I've had an xray and symptoms they don't think it can be anything else, except they keep saying well it's also probbly this. so idk. I think I need a pelvic/hip/hamstring covering mri, and nerve tests to see how bad the entrapment/compression is of the sciatic nerve and now the peroneal nerve. You absolutely should get one - x ray doesn't show anything with nerves. I'm so sorry they're brushing you off. As soon as I mentioned the groin pain to my PT, she said "you need a pelvic MRI." My primary ordered it, but then there was some confusion because apparently there are 2 types of pelvic MRI? I needed a weighted T2 because we weren't looking for reproductive tumors (this is how it was explained to me). It's exhausting to have to constantly advocate for yourself and I'm sorry you're hitting more roadblocks. |
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byjove
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Post by byjove on May 3, 2024 8:23:58 GMT -6
Idk, maybe you ladies have some suggestions. I am on a JAK inhibitor for my AI arthritis and it is helping a lot. However, I struggle with acne as it is, and I have been lucky enough to have the relatively uncommon but well documented side effect of JAKs of worsening acne. It's so bad. Like I have it on my arms (wtf?!). My rheum says there are other options, likely an infusion instead of a pill (bummer) and also I likely won't see the same level of benefits.
So I went back to the dermatologist and she started me on an antibiotic. I've been on the JAK for about 3 months, and she said that if I can get to the 6 month mark and adjust, I may see the worst of the acne taper off. Or not. No way to know yet. I made it two weeks on the antibiotic before I couldn't handle the nausea. I had to get some blood work and it turns out it wasn't just nausea, I am somehow now hypoglycemic after meals. I stopped the antibiotic a week ago, and I'm still struggling. If you google, this antibiotic has a well known correlation with hypoglycemia, but the dermatologist is like No, even though it started when I started the abx. I don't know why the hypoglycemia hasn't resolved (I had a bad episode yesterday with cold sweats and shaking) and I am concerned. I've had two other blood draws in the month prior to this (one fasting, one not), and both glucose levels were good.
I go back to the rheumatologist early next week and I don't know what to think. I also have GI issues and the abx really messed with me, so I'm not keen on trying a new one for a 2-3 month course. The next step is spironolactone, but I'm hesitant because I have low blood pressure as it is and don't tolerate birth control at all, and this messes with hormones (and can also cause breast growth, which I DNW!!).
Aside from the acne, I love how I feel on this JAK. But am worried I'm going to keep fighting side effects from other meds that aren't making it worth it.
Sorry for the long post. I'm crazy to stay on the JAK right?
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miawallace
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Post by miawallace on May 3, 2024 12:11:49 GMT -6
Hey guys I reschedule my biopsy for the 20th bc I got sick this past week. It was a mild flu. I’m okay now but I couldn’t make it on Monday.
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miawallace
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Post by miawallace on May 3, 2024 12:17:11 GMT -6
byjove do you have a glucose monitor? I would start testing fasting and 1-2 hours after meals just so that you have some type of data you can show at your next doctor appointment. I’m sorry. I understand the feeling of treating something while that medication creates other stuff to wonder about. If your glucose was okay last time, I’d hold on to that as reassurance tho.
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byjove
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Post by byjove on May 3, 2024 12:29:34 GMT -6
byjove do you have a glucose monitor? I would start testing fasting and 1-2 hours after meals just so that you have some type of data you can show at your next doctor appointment. I’m sorry. I understand the feeling of treating something while that medication creates other stuff to wonder about. If your glucose was okay last time, I’d hold on to that as reassurance tho. No glucose monitor yet, I keep thinking the problem will go away  but agree it would be helpful to have data. My rheum said to get in with my PCP, so now have an appt Wednesday. I had bloodwork in Jan (not fasting), early March (fasting), and last Friday (late April). That last one was the one with the low glucose 1.5 hours after eating. I felt ok at the time of the blood draw, but by the time I made it home after (about 30 minutes), the low blood sugar feelings settled in. Then I got the results and it all made sense. |
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byjove
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Post by byjove on May 3, 2024 12:32:27 GMT -6
Anyone have a cheap glucose monitor to recommend?
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miawallace
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Post by miawallace on May 3, 2024 12:37:58 GMT -6
Anyone have a cheap glucose monitor to recommend? I know there are some on amazon or any store you can buy. Id ask a pharmacist what they recommend. The most expensive part are the tests. Some are like $20ish with like 20 tests strips or something like that. |
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AmyG
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Post by AmyG on May 3, 2024 14:24:15 GMT -6
byjove, DH uses the walmart glucose test cause the strips are available and reasonably cheap Amazon may have their own brand that has cheap test strips. Your primary care doc may RX you a tester but they tend to be the name brands where the test strips are $$$. You can ask about a constant glucose monitor that reports to your phone/app but that probably won't go if you don't have a diagnosis that makes it covered by your insurance. You do need to know if your blood sugar is going low and how low. DIL regularly goes down to 40 and wants to stay there.
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byjove
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Post by byjove on May 3, 2024 14:26:48 GMT -6
byjove , DH uses the walmart glucose test cause the strips are available and reasonably cheap Amazon may have their own brand that has cheap test strips. Your primary care doc may RX you a tester but they tend to be the name brands where the test strips are $$$. You can ask about a constant glucose monitor that reports to your phone/app but that probably won't go if you don't have a diagnosis that makes it covered by your insurance. You do need to know if your blood sugar is going low and how low. DIL regularly goes down to 40 and wants to stay there. My bloodwork was 55 and I wasn't even feeling symptoms yet, so it would be helpful to know for sure. I had been thinking about getting one, but I guess you and @mia are the kick in the butt I needed. This is just so out of left field for me. Can my body just chill out for now? |
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AmyG
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Post by AmyG on May 3, 2024 14:30:28 GMT -6
byjove, only you can really decide if the side effects of the JAK is too much to handle. Maybe write down the pros and cons and at least talk about what trying something else would entail and what other options might exist. their cost or their side effects may be too much that the JAK makes sense. It is horrible when one thing you are taking seems to work but it comes with all these other side effects that all add up. take this med and then these 3 other meds due to the side effects of the 1st med.
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wedding
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Post by wedding on May 3, 2024 15:52:35 GMT -6
byjove just googling JAK inhibitors and low blood sugar told me it was a possible side effect. Maybe it’s a rare one? I was curious because I started a new med for my headaches that is working but I started having low blood sugars like crazy. I’m T1 diabetic and have a continuous glucose monitor and TG I do because I want feeling it. I woke up to an urgent alarm one night and got up for a snack and immediately passed out. That’s never happened to me before and was terrifying. I was able to work with my endocrinologist and neurologist to balance things out and stay on the medication but I share this because low blood sugar is scary and shouldn’t be messed around with. If we couldn’t find a balance I would have discontinued the medication even though it was finally providing the relief I needed for another chronic issue.
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Post by cargem12 on May 3, 2024 18:28:26 GMT -6
byjove I lurk this thread but had to chime in…I am also on a JAK inhibator, for RA and PSA. I was on spironolactone prior to starting and am now up to 200mg to try and combat the acne. It’s a losing battle and it sucks. Prior to starting this med I finally had somewhat clear skin and I was SO hesitant to start it for fear of this side effect. Also did many months of an antibiotic with no luck. I’m sorry you’re also dealing with this.
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byjove
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Post by byjove on May 3, 2024 18:48:03 GMT -6
byjove I lurk this thread but had to chime in…I am also on a JAK inhibator, for RA and PSA. I was on spironolactone prior to starting and am now up to 200mg to try and combat the acne. It’s a losing battle and it sucks. Prior to starting this med I finally had somewhat clear skin and I was SO hesitant to start it for fear of this side effect. Also did many months of an antibiotic with no luck. I’m sorry you’re also dealing with this. Oh no! Sorry to hear you are dealing with it too. I have PSA too, and inflammatory GI type stuff, but no formal IBD diagnosis. My skin had finally just about been clear when this started too 😭 |
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byjove
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Post by byjove on May 6, 2024 18:35:31 GMT -6
I've been using my test kit and in an unexpected turn of events, my fasting blood sugars are over 100 (in late March it was 80), and I'm regularly measuring 180 in the evening. Before meals I'm near 100. About an hour after eating, I have a very specific headache, nausea, eye blurriness, sometimes my heart will race. Something is extremely out of whack. How do I go from low to high in like a week?
I'm not overweight, exercise daily, and eat quite healthy. At least I see my doctor Wednesday.
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AmyG
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Post by AmyG on May 6, 2024 18:55:11 GMT -6
I've been using my test kit and in an unexpected turn of events, my fasting blood sugars are over 100 (in late March it was 80), and I'm regularly measuring 180 in the evening. Before meals I'm near 100. About an hour after eating, I have a very specific headache, nausea, eye blurriness, sometimes my heart will race. Something is extremely out of whack. How do I go from low to high in like a week? I'm not overweight, exercise daily, and eat quite healthy. At least I see my doctor Wednesday. Hope your dr has good advice/answers weds. Stress can have large effect on blood sugar for some people. So maybe that's part of problem? Of course you've been under stress for longer than this week. |
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AmyG
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Post by AmyG on May 8, 2024 12:47:26 GMT -6
byjoveDid you have your dr appt yet? Hope there's good suggestions for you
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AmyG
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Post by AmyG on May 8, 2024 12:55:19 GMT -6
I gotta decide who I see next as we play wack a mole.
Pelvic floor pt thinks likely it's all piriformis. I have some pelvic floor issues, still some hypertonic muscles and side effects of botox on urine and stool control.
I see pain dr next week to evaluate how well piriformis injection helped. Right now it's still kinda meh. I'm on orders to limit movement as much as I can so it can take full effect, just stretching and pelvic floor exercises. and it's hard to stay below 1000 steps.
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byjove
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Post by byjove on May 8, 2024 13:26:54 GMT -6
byjove Did you have your dr appt yet? Hope there's good suggestions for you It's been a whirlwind of a day, but my PCP did a diabetes work up and tested me for type 1 antibodies. I guess I'll find out tomorrow  she also is having me switch to a continuous glucose monitor (as opposed to a gestational diabetes type glucose test). At least my fingers are feeling ok about that. She mentioned that it was remarkable that I actually measured hypoglycemic on that blood test because it is usually very hard to catch because your body doesn't usually let you go hypoglycemic more than moments before it reacts and is extremely sneaky to measure. I've had three blood tests since December, and my nonfasting glucose in December was 136, which I figured I wasn't fasting, NBD, (the next one I did fasting and it was perfectly normal) but she said that this has probably been going on for longer than the last 2 weeks and anything over 130 tends to point to diabetes, because again if things are working correctly your body should be handling that. I wish my rheum would have flagged that. So in a bit of a shock. I'll see her again next week once we have the results. It would make sense if it was type 1 because I was in a hell of an autoimmune flare that started in November, so I wonder if that was really my tipping point. WTF @ my body. |
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but agree it would be helpful to have data. My rheum said to get in with my PCP, so now have an appt Wednesday.
she also is having me switch to a continuous glucose monitor (as opposed to a gestational diabetes type glucose test). At least my fingers are feeling ok about that.