AmyG
Ruby
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Post by AmyG on Sept 12, 2023 12:42:25 GMT -6
Hi
I'm Amyg and I have chronic pain that won't go away.
Issues with every doc appt they seem to think maybe it's this or that.
something gets added to my chart and then taken off my chart.
It's been knee injury and arthritis pain
arthroscopic surgery on meniscus after 8 months of limping
then it was pain is pes anserine, bursitis, scar tissue in back of knee,
no it's just tight hamstring, hamstring tendonitis/tendinosis
then it's coming from the hip,
piriformis syndrome alone, no it's that along with pelvic floor dysfunction
It's your spine, but after mri it's not really and now we have si joint joining the list.
So I'm chasing the pain around.
Tons of physical therapy, more dr visits than anyone should have for just a little knee pain lol.
Maybe it's all in my head
Hope everyone else in this boat is having better results.
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AmyG
Ruby
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Post by AmyG on Sept 12, 2023 12:45:00 GMT -6
to add
currently trying to figure out if the chiropractor that's in the office of the pain doctor
is that a specialist dr visit fee of $100 copay, or is it chiro fee of $50
or since the referral was for physiotherapy does that fall under pt type therapy visits that are $50 copay.
or are there other fees aside from copay
because he's using the tens unit except it's not tens because it's higher power lol
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gingy
Opal
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Post by gingy on Sept 12, 2023 13:17:44 GMT -6
I've been in pain off and on (mostly on) for the last month between work being nuts, the kids and I all starting school, and moving. Got a steroid pack to knock out the worst of it, but woof. I'm glad it's almost seasonally appropriate to have the heated blanket out 24/7.
I posted in a random thread, but between my doctor, derm, and the med spa nurse, we determined that my arms are just permanently red as a residual effect of the rash I had all of 2021. It busted basically all of my capillaries from the back of my hands to mid-bicep. I am tired of being asked if I "got too much sun this weekend," but I guess I'll have to either get over it or perfect my RBF.
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Post by Rusty Red on Sept 12, 2023 13:38:51 GMT -6
Trying to get an answer from my doc on what I'm still allowed to do with my latest MRI results but yeah right.
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AmyG
Ruby
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Post by AmyG on Sept 12, 2023 14:12:02 GMT -6
I've been in pain off and on (mostly on) for the last month between work being nuts, the kids and I all starting school, and moving. Got a steroid pack to knock out the worst of it, but woof. I'm glad it's almost seasonally appropriate to have the heated blanket out 24/7. I posted in a random thread, but between my doctor, derm, and the med spa nurse, we determined that my arms are just permanently red as a residual effect of the rash I had all of 2021. It busted basically all of my capillaries from the back of my hands to mid-bicep. I am tired of being asked if I "got too much sun this weekend," but I guess I'll have to either get over it or perfect my RBF. so sorry about the arms. you think a fake tan would slightly cover the red. Probably not. Maybe occassionally use the body makeup on arms to make yourself feel better? Pain sucks |
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AmyG
Ruby
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Post by AmyG on Sept 12, 2023 14:14:39 GMT -6
Trying to get an answer from my doc on what I'm still allowed to do with my latest MRI results but yeah right. If it hurts don't do it is probably their advice. does it hurt when you do certain things? My problem is that it doesn't hurt usually while I'm doing things. only after I sit down for a bit or when I lay down to sleep that's when my body says oh yeah, you did too much and you are gonna really feel the hurt now. doesn't matter if it's exercise or dry needling or tens. I only feel it later that day or the next day. And it never lines up exactly with what I do, today sweeping will kill me, tomorrow it will be a different task. |
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gingy
Opal
Posts: 7,657 Likes: 35,376
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Post by gingy on Sept 12, 2023 14:27:58 GMT -6
I've been in pain off and on (mostly on) for the last month between work being nuts, the kids and I all starting school, and moving. Got a steroid pack to knock out the worst of it, but woof. I'm glad it's almost seasonally appropriate to have the heated blanket out 24/7. I posted in a random thread, but between my doctor, derm, and the med spa nurse, we determined that my arms are just permanently red as a residual effect of the rash I had all of 2021. It busted basically all of my capillaries from the back of my hands to mid-bicep. I am tired of being asked if I "got too much sun this weekend," but I guess I'll have to either get over it or perfect my RBF. so sorry about the arms. you think a fake tan would slightly cover the red. Probably not. Maybe occassionally use the body makeup on arms to make yourself feel better? Pain sucks A tinted SPF was the nurse's suggestion. I have used tanning drops to tone it down a bit. I have a friend who is a spray tanner--I should let her give it a shot for something longer lasting. |
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Post by Rusty Red on Sept 12, 2023 15:51:09 GMT -6
Trying to get an answer from my doc on what I'm still allowed to do with my latest MRI results but yeah right. If it hurts don't do it is probably their advice. does it hurt when you do certain things? My problem is that it doesn't hurt usually while I'm doing things. only after I sit down for a bit or when I lay down to sleep that's when my body says oh yeah, you did too much and you are gonna really feel the hurt now. doesn't matter if it's exercise or dry needling or tens. I only feel it later that day or the next day. And it never lines up exactly with what I do, today sweeping will kill me, tomorrow it will be a different task. Yes, that is their advice usually, you're right. It actually feels better when I'm active. The pain sets back in later. It doesn't usually increase much or at all when it comes back, just comes back the same. |
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Pistol
Diamond
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Post by Pistol on Sept 12, 2023 18:31:03 GMT -6
I'm finally getting an ablation/tube removal next week so hopefully the ablation does away with periods and I won't feel like dying every 3 weeks-3 months with zero warning in between.
New fun is low vitamin D levels that are continuing to drop despite being put on a supplement for it. I'm hoping I don't have to go to shots next. But it would also explain my super tiredness lately.
Unmedicated ADHD continues to be super fun and totally helpful with work. 🙃 I've been feeling my anxiety creeping back in so that's fun too. Hoping after I recover from surgery to get back to exercising to hopefully head some of that off and help with the ADHD as well.
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brux
Diamond
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Post by brux on Sept 12, 2023 19:11:26 GMT -6
Pistol I have low vitamin D too, and now that I have MS, I’m supposed to get 5000 IUI (well above the daily recommended allowance). Because I need a win and to treat myself from time to time, I buy these. They taste like candy and I look forward to my daily gummy. www.nordic.com/products/vitamin-d3-5000-gummies/?variant=41213343629496&After a couple months, my vitamin d level increase into the normal level.
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AmyG
Ruby
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Post by AmyG on Sept 12, 2023 19:17:36 GMT -6
so sorry about the arms. you think a fake tan would slightly cover the red. Probably not. Maybe occassionally use the body makeup on arms to make yourself feel better? Pain sucks A tinted SPF was the nurse's suggestion. I have used tanning drops to tone it down a bit. I have a friend who is a spray tanner--I should let her give it a shot for something longer lasting. Treat yourself to a spray tan and well soon it will be long sleeve weather? |
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AmyG
Ruby
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Post by AmyG on Sept 12, 2023 19:18:02 GMT -6
Pistol I have low vitamin D too, and now that I have MS, I’m supposed to get 5000 IUI (well above the daily recommended allowance). Because I need a win and to treat myself from time to time, I buy these. They taste like candy and I look forward to my daily gummy. www.nordic.com/products/vitamin-d3-5000-gummies/?variant=41213343629496&After a couple months, my vitamin d level increase into the normal level. all vitamins in gummies!! heck all pills would be nice too. |
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AmyG
Ruby
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Post by AmyG on Sept 12, 2023 19:28:13 GMT -6
I'm finally getting an ablation/tube removal next week so hopefully the ablation does away with periods and I won't feel like dying every 3 weeks-3 months with zero warning in between. New fun is low vitamin D levels that are continuing to drop despite being put on a supplement for it. I'm hoping I don't have to go to shots next. But it would also explain my super tiredness lately. Unmedicated ADHD continues to be super fun and totally helpful with work. 🙃 I've been feeling my anxiety creeping back in so that's fun too. Hoping after I recover from surgery to get back to exercising to hopefully head some of that off and help with the ADHD as well. It's ok to add some anxiety meds? unmedicated cause you don't like how it feels/works/costs/the struggle to get refills? most importantly, with an ablation that part of your life will settle down and you can focus on the rest of you I hope! |
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AmyG
Ruby
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Post by AmyG on Sept 12, 2023 19:37:16 GMT -6
If it hurts don't do it is probably their advice. does it hurt when you do certain things? My problem is that it doesn't hurt usually while I'm doing things. only after I sit down for a bit or when I lay down to sleep that's when my body says oh yeah, you did too much and you are gonna really feel the hurt now. doesn't matter if it's exercise or dry needling or tens. I only feel it later that day or the next day. And it never lines up exactly with what I do, today sweeping will kill me, tomorrow it will be a different task. Yes, that is their advice usually, you're right. It actually feels better when I'm active. The pain sets back in later. It doesn't usually increase much or at all when it comes back, just comes back the same. I can see you staying super active in comparison to where I am. I admire that. and glad that your pain is staying at the same level, not increasing. that's good. I stay as active as I can or I feel worse too. I get out of bed and I start the day ok and by the end of the day I'm dragging a leg behind me and in pain. So I get up every day and try to stay moving and active, but some things I must do only minimally to avoid nerve pain city. I mix it up, trying different things. but the list of things that end up with flare of sciatic nerve is long. and then I'll try one of those things and they will be fine for weeks to do that much walking (for instance) and then that much walking is not ok. very unpredictable what will push it over the edge to unbearable. or I'm too stubborn to admit where the line is, as I keep trying to regain back to where I was bad off last summer even. |
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Post by kittyriot on Sept 12, 2023 19:59:33 GMT -6
I’m travelling for work this week and the flight was not great so I’m managing pain while at a conference, which is never a good time. I just got back to my room, at 9:30 pm, and I was almost horrified at how late I was out.
You know you are old and broken when…,
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AmyG
Ruby
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Post by AmyG on Sept 12, 2023 20:18:45 GMT -6
I’m travelling for work this week and the flight was not great so I’m managing pain while at a conference, which is never a good time. I just got back to my room, at 9:30 pm, and I was almost horrified at how late I was out. You know you are old and broken when…, Sorry the flight wasn't good and the pain is not cooperating with your conference time. gasp you were out until 930! That's past my bedtime! Definitely old and broken over here |
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Pistol
Diamond
Posts: 28,064 Likes: 62,420
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Post by Pistol on Sept 13, 2023 3:22:12 GMT -6
I'm finally getting an ablation/tube removal next week so hopefully the ablation does away with periods and I won't feel like dying every 3 weeks-3 months with zero warning in between. New fun is low vitamin D levels that are continuing to drop despite being put on a supplement for it. I'm hoping I don't have to go to shots next. But it would also explain my super tiredness lately. Unmedicated ADHD continues to be super fun and totally helpful with work. 🙃 I've been feeling my anxiety creeping back in so that's fun too. Hoping after I recover from surgery to get back to exercising to hopefully head some of that off and help with the ADHD as well. It's ok to add some anxiety meds? unmedicated cause you don't like how it feels/works/costs/the struggle to get refills? most importantly, with an ablation that part of your life will settle down and you can focus on the rest of you I hope! unmedicated ADHD because of tachycardia. I could add in anxiety meds but I'm wanting to see if it's just the nerves of my upcoming surgery or if I really need to go back on them. Also, I feel like I'm barely staying awake as it is somedays, and anxiety meds always make me soooo drowsy when I start them so I'm nervous about that. When I was exercising regularly, my anxiety was pretty much nonexistent so if I can get back to that then I will. I need the exercise like woah anyhow. 🤣 If it starts to get unmanageable I will definitely talk to my dr though. |
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gingy
Opal
Posts: 7,657 Likes: 35,376
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Post by gingy on Sept 13, 2023 7:10:28 GMT -6
A tinted SPF was the nurse's suggestion. I have used tanning drops to tone it down a bit. I have a friend who is a spray tanner--I should let her give it a shot for something longer lasting. Treat yourself to a spray tan and well soon it will be long sleeve weather? We're doing family photos next month, so depending on the weather it will definitely be one of these options! |
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Post by Rusty Red on Sept 13, 2023 7:27:51 GMT -6
Well good news is doc says I can train to pain tolerance. Bad news, they're handing me off to pain management. Guess we'll see what happens.
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nelzie
Sapphire
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Post by nelzie on Sept 13, 2023 7:40:30 GMT -6
I had an open carpal tunnel release done on my right hand two weeks ago and got the stitches out yesterday. It still looks and feels pretty rough but the numbness/tingling/nerve pain is gone. Being a lefty has been challenging but I'm slowly able to use my right hand more.
He wants me to get my left hand done by the end of the year preferably or at least within the next 6 months. My left hand has been getting worse since I've been using it more.
Unfortunately when I had my pre-op labs done they discovered I now have diabetes. I can't get into my doctor for 2 more weeks so for now I've been just trying to cut out sugar and cut down on carbs while I wait. I've been really struggling with it emotionally. I haven't told anyone because I'm so ashamed and I feel like since I'm fat everyone will blame me.
Also, my WBC count has been slightly elevated for a long time and they are now sending me to a specialist. I'm freaking out because it's a cancer/blood center but from my googling it doesn't seem to be high enough to be cancer. But I really have no idea what's going on.
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hawkward
Global Moderator 
Loss, Infertility
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Post by hawkward on Sept 13, 2023 7:54:36 GMT -6
nelzie if it helps your nerves at all, when DS1 had blood dyscrasia, we were seen pretty equally by oncologists and hematologists even though he never developed cancer.
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hawkward
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Post by hawkward on Sept 13, 2023 7:58:36 GMT -6
I’m very blah. Week 3 of 6 from surgery recovery. My abs are starting to be not completely useless which is nice, but I’m still not allowed to lift over 10 lb or do any sort of repetitive weight bearing. It’s frustrating because I can feel my back losing the strength I gained since the RFA.
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AmyG
Ruby
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Post by AmyG on Sept 13, 2023 15:54:22 GMT -6
It's ok to add some anxiety meds? unmedicated cause you don't like how it feels/works/costs/the struggle to get refills? most importantly, with an ablation that part of your life will settle down and you can focus on the rest of you I hope! unmedicated ADHD because of tachycardia. I could add in anxiety meds but I'm wanting to see if it's just the nerves of my upcoming surgery or if I really need to go back on them. Also, I feel like I'm barely staying awake as it is somedays, and anxiety meds always make me soooo drowsy when I start them so I'm nervous about that. When I was exercising regularly, my anxiety was pretty much nonexistent so if I can get back to that then I will. I need the exercise like woah anyhow. 🤣 If it starts to get unmanageable I will definitely talk to my dr though. I s your anxiety keeping you from sleeping? Cause that was one of the things making my sleep worse was anxiety and then the sleepiness made the anxiety worse. I started on a 5mg dose of buspar taken mostly at night until I got used to it. It's worked well for the background anxiety that was keeping me from doing things like normal person, and helped with my sleep. |
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AmyG
Ruby
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Post by AmyG on Sept 13, 2023 15:57:53 GMT -6
Well good news is doc says I can train to pain tolerance. Bad news, they're handing me off to pain management. Guess we'll see what happens. Pain management does seem like oh, these people are just going to manage my pain and I'm never getting better. But give them at least a chance. pain management can do not just meds and injections/blocks, but they may look at your situation with different set of eyes, you can move/run but your pain doesn't go away, so it's something else. I had one pain doc convinced it was my back but new one thinks it's si joint and some other things. so they've lead me into different treatment modalities. I've had another one of the marvelous weeks of no pain, so that's something I got from pain doc, and it wasn't from rx meds or injections. |
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AmyG
Ruby
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Post by AmyG on Sept 13, 2023 16:00:04 GMT -6
I’m very blah. Week 3 of 6 from surgery recovery. My abs are starting to be not completely useless which is nice, but I’m still not allowed to lift over 10 lb or do any sort of repetitive weight bearing. It’s frustrating because I can feel my back losing the strength I gained since the RFA. I was gonna tag you to ask how you were doing after your surgery. I know it sucks to be restricted so long. you'll get that strength back! |
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AmyG
Ruby
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Post by AmyG on Sept 13, 2023 16:03:23 GMT -6
nelzie, You don't have diabetes because you are fat. You likely have had insulin resistance/prediabetes for a while which is why you may be fat. just keep in mind right now to eat protein/fat with any carb you consume. choose "better for you" carbs, not carb free. and ask for referral to a nutritionist, you might could get that referral before even seeing your doc.
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Pistol
Diamond
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Post by Pistol on Sept 13, 2023 19:28:20 GMT -6
unmedicated ADHD because of tachycardia. I could add in anxiety meds but I'm wanting to see if it's just the nerves of my upcoming surgery or if I really need to go back on them. Also, I feel like I'm barely staying awake as it is somedays, and anxiety meds always make me soooo drowsy when I start them so I'm nervous about that. When I was exercising regularly, my anxiety was pretty much nonexistent so if I can get back to that then I will. I need the exercise like woah anyhow. 🤣 If it starts to get unmanageable I will definitely talk to my dr though. I s your anxiety keeping you from sleeping? Cause that was one of the things making my sleep worse was anxiety and then the sleepiness made the anxiety worse. I started on a 5mg dose of buspar taken mostly at night until I got used to it. It's worked well for the background anxiety that was keeping me from doing things like normal person, and helped with my sleep. Surprisingly I have been passing clear TF out when I go to bed. I have my weekly therapy on Friday so I'll probably mention it then. |
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Pistol
Diamond
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Post by Pistol on Sept 13, 2023 19:32:55 GMT -6
nelzie, sorry about the diabetes dx. You don't have to share that information with anyone you don't feel safe with telling. I have known skinny people who are diabetic and not do skinny people with stellar A1C levels. Some part of it is genetics and I believe there are other risk factors like if you get gestational diabetes it can increase risk of it later. And I know people who "did everything right" and still ended up with GD. Please be kind to yourself and I hope over time you can find peace with the dx.
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Post by Rusty Red on Sept 14, 2023 7:33:25 GMT -6
Well good news is doc says I can train to pain tolerance. Bad news, they're handing me off to pain management. Guess we'll see what happens. Pain management does seem like oh, these people are just going to manage my pain and I'm never getting better. But give them at least a chance. pain management can do not just meds and injections/blocks, but they may look at your situation with different set of eyes, you can move/run but your pain doesn't go away, so it's something else. I had one pain doc convinced it was my back but new one thinks it's si joint and some other things. so they've lead me into different treatment modalities. I've had another one of the marvelous weeks of no pain, so that's something I got from pain doc, and it wasn't from rx meds or injections. We know what mine is, just doesn't get better for me even with trying everything. I'm keeping an open mind for the PM specialist, we'll see what he says. |
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sasam
Gold
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Post by sasam on Sept 15, 2023 10:07:22 GMT -6
Hoping it's okay to jump in here. Had a good appointment with my neurologist yesterday to put together a plan for treating my MS after I deliver baby #2 in December. I haven't been on any treatment (other than getting steroids during a flare) since getting diagnosed in May 2022 since we were actively trying to conceive. My MS has stayed stable during pregnancy but I am nervous about a potential relapse postpartum. Glad to have a plan in place to address a potential relapse though! Also got the ball rolling to start on Kesimpta about a month or so after delivery. It felt kind of nerve wracking to go without treatment while trying to get pregnant, but I'm glad I have a supportive neurologist who was willing to monitor me closely during that time. And I will be glad to get started on treatment and feel like I am finally doing something to take control of my MS.
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