Chronic conditions/pain support and venting thread

[AmyG]

Figured I'd start a new thread.
For anyone even if it's hows it going for your spouse/so or child.

How are you doing?

What's new in your status, meds and treatments?

How's doctors specialists visits?

Insurance snags?

Is there a good thing going on with you or an interaction with medical care person or treatment thats lightened your load? I sure hope so.

Venting allowed and encouraged.
Anything we can do to help?

Should I tag people from prior threads or not? Maybe they don't wanna talk about it.

[AmyG]

I'm gonna be long here. Just warning.

How are you doing?
I'm disappointed in my current status. A bit depressed over here that everywhere takes me back to same point I was before we tried it.

What's new in your status, meds and treatments?
Botox injection in pelvic floor really made pelvic floor muscles mad. Increased numbness in leg
Didn't work to relax all the muscles like it was supposed to. New onset ankle heel zips and numb. Likely procedure positioning pinched nerve. Great fun.
Back to pelvic floor pt for 12 weekly visits and I'm not optimistic.

How's doctors specialists visits?
Too many dr and they still aren't coordinating care. So I gotta say same thing to primary dr, pain dr, ortho dr, throw in pelvic pt and ortho pt. Maybe refer to neuro for a nerve test to figure out where sciatic nerve is pinched but maybe that's not needed.

Insurance snags? Insurance denied $3500 charge for botox because dr office didn't get the prior authorization. But they did send it in.
My policy changed #'s from Feb 29 to March 1 with same ins company. office person sent for prior authorization and it was denied because she sent feb policy # for March 1 procedure. When she realized error she sent in with new march policy number for pre authorization for 3/1 procedure. Insurance person saw 2nd request and ignored it, put it with the denied one even tho 2 different policy numbers. So they appealed it and maybe it will be fixed.
Insurance told me anything from Feb policy would be automatically linked to March policy. They lied. I had to call a dozen times and submit numerous tickets with their it to Sorta fix things so I could log in and see new policy at all. Was stuck only on old policy that would scream in red at top policy cancelled.

I'm still gonna owe a lot For botox Cause cheap marketplace plan witH high deductible.

Is there a good thing going on with you or an interaction with medical care person or treatment thats lightened your load? I sure hope so.
Primary is changing rescue anxiety med now that pain dr cleared it.

Primary Dr is still ray of sunshine. Listens to everything I say. Doesn't rush out.
I did ask what body part should we blame now for my pain and numb leg toes. He's like well maybe it's your itchialgluteous bursa.
I didn't think he'd come up with something else so that was kinda chuckle worthy.

Venting allowed and encouraged.
Anything we can do to help?
Keep listening. Really
Giving me ideas cause that's really helped me.

I'm just tired of butt hip sit bone pain and numb zapping leg numb toes and heel.
Prob should have made each question a new reply
apologies.

[miawallace]

Where to start. So I had an awful flare up after my aunt died. It lasted around 6 weeks.

Good news is I met with my gastro and all my Liver bloodwork is actually within normal limits. That’s hasn’t happened since 2018 for me. Dr seemed a bit concerned last time I saw him bc I still wasn’t within normal numbers. We were discussing where to go from there. But he called me and told me all was well and keep doing what I’m doing.

He ordered an abdominal ultrasound where everything was unremarkable too. Thank you Liver!

I’m getting a Liver Biopsy on April 29. My gastro basically wants to make sure I don’t have AIH crossover and wants to stage my PBC.
He started me on vitamin D bc that was low.

The weird news is my primary tested me for Autoimmune stuff. I was borderline positive on one of them. I don’t know. I haven’t gotten a call or whatever so we’ll see. I don’t want to think about it too much. I’ll talk to her when I’ll talk to her I guess. 😂

[gingy]

I met with all three of my current docs in March.

Migraines are under control with new dose of Topamax. I'm going to KOKO there.

My WBC has been low for a bit, but I officially hit leukopenia numbers, so we had to back off one of my immunosuppressants. My rheum was pleasantly shocked at how well my skin is doing, which we believe is due to aforementioned immunosuppressant. So if it starts to flare back up we're looking at infusions since we're out of other options. FX shit just stays where it is.

Derm was also super pleased with my skin. I should be in the clear to treat the remaining spider veins on my ankles from the Great Rash of 2021. I seriously love him, though. I asked about the veins and made an "ew" face and he legit scolded me for talking bad about myself. But after he and my rheum finally cleared up my entire legs from my ankles to literally my ass cheeks, I don't want any damn purple veins leftover.

[AmyG]

miawallace
Sorry 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 🤔

[miawallace]

Apr 10, 2024 19:59:25 GMT -6 AmyG said:

miawallace
Sorry 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::::: 😂

[AmyG]

gingy
3 Dr's in one month seems busy, heavy and possibly expensive.
Hope things stay well enough for you to get rid of those spider veins. If you can do something like that makes you feel better about yourself in some way who can say that's bad?

[AmyG]

Apr 10, 2024 20:02:42 GMT -6 miawallace said:

Apr 10, 2024 19:59:25 GMT -6 AmyG said:

miawallace
Sorry 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::::: 😂

Hope yours is the lay kinda as low as you can for couple days and that's that. My mom complains a lot and that liver is on the list years and years later.

[gingy]

Apr 10, 2024 20:07:47 GMT -6 AmyG said:

gingy
3 Dr's in one month seems busy, heavy and possibly expensive.
Hope things stay well enough for you to get rid of those spider veins. If you can do something like that makes you feel better about yourself in some way who can say that's bad?

I try to do as much close together as I can so my follow-ups are also close together and I don’t lose track of appointments. It does get expensive, especially with labs that insurance doesn’t give a shit about. My rheum bills get added to a payment plan I’m on so it doesn’t feel like it hits all at once.

My derm will definitely take care of the veins, but I love his attitude. Especially considering he has a med spa attached to his practice. Like if you want a procedure and can afford it, by all means. But never feel like you “have to” to feel better about yourself, you know?

[AmyG]

Apr 10, 2024 20:15:21 GMT -6 gingy said:

Apr 10, 2024 20:07:47 GMT -6 AmyG said:

gingy
3 Dr's in one month seems busy, heavy and possibly expensive.
Hope things stay well enough for you to get rid of those spider veins. If you can do something like that makes you feel better about yourself in some way who can say that's bad?

I try to do as much close together as I can so my follow-ups are also close together and I don’t lose track of appointments. It does get expensive, especially with labs that insurance doesn’t give a shit about. My rheum bills get added to a payment plan I’m on so it doesn’t feel like it hits all at once.

My derm will definitely take care of the veins, but I love his attitude. Especially considering he has a med spa attached to his practice. Like if you want a procedure and can afford it, by all means. But never feel like you “have to” to feel better about yourself, you know?

When theres this chronic thing in your life I feel like it's OK to have a feeling like I really have to do this one thing. Something I have control of to feel better about myself.
Like I feel like I have to dye my hair because it's something I can control to make me feel more like the me I used to be. so feeling like I just have to do this one thing, like I just "HAVE TO Do it" and I'll get a bit of, I don't know, relief?

And if im doing it for myself and not for someone elss or for society then damnit I can do it to be happier in my own body if I want to.
I'm going deep on the thought here though. Excuse me.

[caer]

Hi, I hope it’s ok if I jump in here. I don’t have a diagnosis yet but I’m in the process.

I’ve had gastro issues most of my life. I was diagnosed with IBS and gastritis years ago but I go through periods of time (years, honestly) where I’m fine.

I started with the gastro stuff again a couple of months ago but with some new fun symptoms. I’m having joint pain and severe fatigue also. My left hip and back are sometimes so painful I can’t bend over. I also have a lot of pain in my hands and sometimes in my knees and feet. The fatigue is killing me. Prior to this, I was running 5 miles a day and now a 2 mile walk with my dog wipes me out. I feel like I need to nap every day and even then, I’m asleep by 8pm.

I had something similar about 3 years ago, where I had a fever and joint pain that both lasted for 2 months. I never got a diagnosis and it went away so we just kind of moved on. I also had a fistula that I had surgically repaired 9 years ago (super fun).

Given those symptoms, my GP is thinking maybe Crohns? I’m being referred to a gastroenterologist for a colonoscopy (also fun). So we’ll see but I’m frustrated and wanting some answers.

[Kenny1980]

I started my enzyme replacement therapy about 3 weeks ago with 3 times a week injections for my new diagnosisof HPP. As expected my pain and fatigue has gotten worse. Hopefully around month 3 I start to see improvements and I am hoping my pain goes way down and I can be more active. Thankfully insurance approved my new medication quickly and the co-pay is low and I qualify for the co-pay assistance program so I don't have any out of pocket cost. Injection site reactions are common with this medication and unfortunately I have red itchy reactions the day following my injections. Hopefully those stop soon. I finally feel like I have the right care team and everyone is actually interested in helping me feel better and most importantly they know and believe me when I tell them about my pain.

[miawallace]

caer the autoimmune fatigue is unreal. I hope you get answers soon.
I get severe fatigue right when a flare up is about to start. Mostly after high stress or a virus/illness hits me.

[AmyG]

I hope the fatigue lessens for both of you caer and Kenny1980
And that your treatments really help soon with lessening side effects in coming days and weeks

[caer]

Apr 11, 2024 10:24:13 GMT -6 miawallace said:

caer the autoimmune fatigue is unreal. I hope you get answers soon.
I get severe fatigue right when a flare up is about to start. Mostly after high stress or a virus/illness hits me.

Thank you. I’m sorry you deal with it, too. I’ve always been a high energy/antsy type of person and today I literally didn’t have enough energy to blow dry my hair. It’s crazy.

[willow]

I'm not sure if I can go here...I've had chronic low back pain since giving birth to the twins, and lower abdomen sensitivity/pain from my c section scar tissue. I've gone to 5 appointments with a clinical soft tissue massage therapist where he's been working on my low back and also lymphatic drainage massage with my scar tissue. I am amazed at how much less pain I've had so far. He gave me some ab exercises to help since my weakened core is absolutely related to my back pain and that is helping a lot too. I am super impressed with the appearance of my scar and my abdomen already as well.

I am not sure if chronic PTSD qualifies as chronic pain but it is certainly a kind of chronic pain. I've been doing ketamine infusions for almost 4 months now and it has changed my life completely. I don't even know how to properly describe it but it is the only thing that has ever made me feel this way. The neuroplasticity of my brain is continually being expanded and it is incredible.

[sasam]

Finally on an MS treatment after being diagnosed 2 years ago and putting off treatment while TTC and being pregnant. Gave birth at the end of November and started on Kesimpta in January. The initial loading dose knocked me on my ass. Thankfully the subsequent doses haven't been too bad, but I've struggled with my weakened immune system from the treatment. Got hit with strep, followed by Covid, followed by a severe outbreak of shingles. Was thankful to be on maternity leave during all of that, but it sucked that a good portion of my last 2 months of leave were spent fighting sickness. Felt really low for a few weeks while dealing with shingles. I never want to go through that again! Definitely makes me nervous having 2 young kids bring home sicknesses since I seem to pick up every sickness now and it knocks me down way longer than it used to. Really working on resting as much as I can and focusing on improving my diet, which got really terrible toward the end of my pregnancy since I had zero energy to do anything.

On the bright side, I had my annual MRI this week and everything is stable with no new lesions. Very thankful for that since I was super concerned about the possibility of a postpartum relapse. I've had some pseudo-flare symptoms with my recent sicknesses, but nothing new has popped up, so I will take that win for sure! Getting the MRI was interesting because they could not seem to find a vein for the IV contrast. It took a total of 3 people and 8 attempts to get the IV in. I am all bruised up on my arms and hands, but glad we got it done so I could get the MRI out of the way.

[trueblue]

Also not really sure if I go here but my Hashimoto’s continues to be poorly controlled. I am currently on 2 thyroid meds (which is an improvement over just 1) but continue to have all the symptoms that my thyroid isn’t functioning well. I am over being exhausted, the brain fog, and gaining weight just by thinking about food. I tried going gluten free and it didn’t have enough of an impact to make the hassle of it worthwhile.

I am not thrilled with the care I am getting from my endocrinologist but they are the only practice close to me that is covered by my insurance. I can’t afford to self treat with the other endocrinologists in town and I don’t want to burn a full day of PTO every time I have to go to the doctor (currently every 90 days).

I don’t know if something else is going on or if this is just my peri-menopausal bum thyroid reality. All I know is that it sucks to weigh more now than I did just before I gave birth.

[caer]

Apr 11, 2024 10:24:13 GMT -6 miawallace said:

caer the autoimmune fatigue is unreal. I hope you get answers soon.
I get severe fatigue right when a flare up is about to start. Mostly after high stress or a virus/illness hits me.

I’m sorry to quote you again but I had a question (but feel free to ignore!) You mention viruses - do they usually trigger your autoimmune issues? Your post reminded me I had the norovirus shortly before this all started and I’m wondering if they could be related but I’m new to all of this.

[miawallace]

Apr 11, 2024 13:30:00 GMT -6 caer said:

Apr 11, 2024 10:24:13 GMT -6 miawallace said:

caer the autoimmune fatigue is unreal. I hope you get answers soon.
I get severe fatigue right when a flare up is about to start. Mostly after high stress or a virus/illness hits me.

I’m sorry to quote you again but I had a question (but feel free to ignore!) You mention viruses - do they usually trigger your autoimmune issues? Your post reminded me I had the norovirus shortly before this all started and I’m wondering if they could be related but I’m new to all of this.

They seem related to me. At least that’s been my personal experience. Everytime I get moderately sick immediately, the intense fatigue starts. Like I need to take mini naps couple times a day. Then my hair falls off. Brain fog, etc. I’ve been timing it and it usually lasts 6-8 weeks for me.

[wedding]

It's been a while since I checked in. I have a few conditions. Two are new this year. Sarcastic yay!

T1 diabetes. I have been on the omnipod insulin pump for years but they discontinued the classic model in January and the new model works with a continuous glucose monitor. Which is great, except even with my federal employee insurance and shopping plans, it is costing me about $900 out of pocket every 3 months. It has also been an adjustments since now the pump reacts to my glucose vs me entering it. I have had some really bad lows and recently passed out for the first time ever due to a low. It was the middle of the night and I woke to the alarm sounding that my sugar was low and got up for a snack. Luckily I was only out a few seconds and DH was there. I hit my head though and was pretty sore all over. It has been two weeks and things have evened out a bit since my Dr made adjustments but it's all scary.

Migraines. Last year I started getting more frequent headaches of seemingly all types. Some that I identified as the occasional migraines I would get and others so painful I would be in bed writhing most of the day. The only things found in testing was that there was some excess Cerebral Spinal Fluid (CSF), but that can be an incidental finding. No medication was working and things we getting worse. In February I had a spinal tap to drain and test the fluid and there was no excess fluid. Obviously that was not the cause of the headaches. I finally started on a medication that is helping, Zonisamide, and was headache free for about 3 weeks. The past two days I have had a couple painful headaches. I am just crossing my fingers that this works.

Lastly, and this one has been a joy, I was diagnosed with Hidradenitus Supperative (HS). It is a skin condition that causes boils and abscesses to form from infected hair follicles. The cause isn't fully known. I am in Stage 1 and am working with my dermatologist to stay there but there's not a lot of research about how to slow down the progression. One of the thoughts is starting biologics early but I don't want to do that since I already have a suppressed immune system. Right now I am battling a recurring boil on my inner groin area. Its really painful when it is flaring and I can't do things I enjoy like biking, since it irritates it further. I have a goal of being able to do the ropes course on our vacation in June. The harness placement will be uncomfortable but if I am not in a flare, I should be ok. I have a follow up with my Dr on Monday to come up with a game plan.

I'm trying not to be too down about stuff. It's hard when it feels like my body hates me so I am trying to be hopeful that things will start working out.

[brux]

Yay for meds and for no new lesions, sasam! That’s awesome news in the world of MS.

I have been worried about the immune system impacts as well. I haven’t noticed myself catching more illnesses, but I do find myself feeling worse for longer than pre-meds.

I’ve decided the one thing I can do is wear a mask from time to time. People probably think I have Covid 🤪

[peachesncream]

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.

[AmyG]

Anyone who has said "I'm not sure I belong here" or similar
This isnt a strict plane with rules or requirements -- chronic just meaning long lasting
as in this is long enough already.

If you've got a thing going on with you and wanna talk complain vent comraderie what have you then post.

[AmyG]

I forgot a new good thing. My 1mg folic acid maybe helping my non iron dependent anemia. Most people dont take more than 400mcg even when pg.
Blood count has gone up almost 1 point. But still not above 10.
And I get folic acid free from insurance lol.

[AmyG]

brux you rock that mask if it keeps you healthy

willow glad you are getting some relief from the treatments I remember you were worried about I'd before you started.

[AmyG]

sasam I can't imagine the stress of all that time without treatment while ttc and pregnant. Such a weight that must have been. Great that it was a blip and your tests showed nothing new. Whew. Did you have a little party after you got those results?

[miawallace]

wedding how scary to pass out from low numbers. Thank goodness your husband was there. I hope your numbers don’t get that low again. Easier said and all that. But i feel so much for type 1 diabetics and all the costly health care. I can’t even imagine paying that much myself. Hugs on that front.

Also I found out about HS via tiktok and I’ve seen how painful that can get. Hopefully it stays at stage 1 and whatever has been working to keep it relatively okay keeps working for you.

[AmyG]

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?

[AmyG]

wedding Diabetes is complicated enough without the hoops of companies changing products and having to start anew.
Dil ia not diabetic per tests but she gets super lows and her Dr's are so much oh well. And then her insurance changes coverage or companies change and anything that she used that alarms on lows stops being covered and then approvals and fights with insurance starts all over again