Questions and update

[JennaShi]

Hi all, I just have a couple questions:

1.When you get a steroid shot in a joint, is it normal to experience the joint being swollen a little while later and then the next day? Like almost solid swollen? And maybe something like feeling warm in the eyes?

2. Do you ever forget to write symptoms down, or is it just overwhelming to write stuff down and does your Rheumy expect you to share all of the symptoms you’ve experienced? Or just the ones in relation to what they’re seeing you for?

3. For those with small fiber neuropathy, do you experience shooting pains and pain in one area that pulses and intensifies and spreads with each pulse? Ugh, does that make any sense?

4. Not related to lupus possibly, but Does anyone experience moments where you realize you were spacing out, on the tail end of it and snap back into being attentive? If so, have you talked to anyone about it and have they said what they think it might be?

Saw the Rheumy in person yesterday and she gave me a steroid shot in my knee, I almost passed out after the fact, and I was up higher but saw my feet afterwards and they were purpleish and knuckles were a more blue tinge. I was leaning on them to get more oxygen, but could I have caused a Raynauds situation or do you think it was the pressure? Today my knee is like a solid swollen, I can’t fully extend it and have been taking naproxen 500mg both days because of the pain. We live in a two story house and although I scoot down the stairs, I still walk to like the bathroom and the couch/ kitchen etc. i did walk a ways yesterday from car to get my daughter and back and in between so I wonder if that was it but had taken an advil an hour before and then had to take a naproxen.

Back to topic: Rheumy says my pain is primarily due to fibromyalgia. She doesn’t know about rib situation, or chest bump and told me to tell my neurologist about erthromyalgia. Have been having high total protein in urine but perfect ratio so she’s happy. C3 has been slightly declining but still within range so that’s good and C4 is good. I feel like I should be getting better: iron is perfect, b12 shots are regular, but I am fatigued during the day and although experience spirts of energy, and clarity when taking iron. I’m not sure why I’m not able to do more in the day. I know sleep is still bad, and vivid dreams from ldn (increased recently) but i end up needing a nap and still can’t do that much even after some relief from my nap.

Started taking a college class online and will have a late starting one later this spring to keep busy. I got a disability letter to get extra help, yay! And think about A often. Lots of firsts continue without her and I hope she’s doing well. Thought I heard our home phone ring last night but it may have just been me day dreaming. Not having as much anxiety these days and people don’t come over, so ai think it helps.

I hope you’re all doing well and enjoying the days getting longer and a bit warmer. It’s finally starting to feel like spring again!

[DRunnerchick]

Kenalog injection (steroid) do sting a bit. My GP who is also bird certified in sports Med does mine and she always does lidocaine first. It does tend to make the joint feel “full”. I have only had to them in my shoulders so can only speak to that. It took a few days to start feeling miraculous. Mine were for frozen shoulder or adhesive capsulitis. When it happened to my left shoulder, it was completely frozen and that same day I was sent to physical therapy for them to work it while the lidocaine was still effective. Within a few days, it was 30% better and with PT it continued consistently. My right shoulder wasn’t as smooth. But I wouldn’t do anything different.

Spaceouts- yes, I actually now nod off and even after having an iron infusion etc, no one can explain. I sometimes forget names of concepts in my profession (methods or professional’s names) that I’ve known for decades. It doesn’t seem to matter if it’s long term memory or something I just looked at. I used to have a photographic memory 🤷‍♀️Sometimes seems random too, like it isn’t related to sleep at all.

All I can say is, I with you, I see you and if I learn of any solutions, I will share them here. 🍀✨💕💐

D🏃🏽‍♀️

[JennaShi in reply to DRunnerchick]

Hi D thank you for responding! I’m sorry you’ve had to get shots in your shoulders, that sounds painful (with and without), but am so glad after sometime it has improved your pain, you were in good hands, and improved your mobility. Will you continue to receive shots and PT? I’m encouraged to that the full feeling will go away too! This is my first time and am hopeful it will help in the long run too.

How have you been?

I hear ya in regards to the spacing out and seems like it’s difficult to know what is what and sometimes drs. Are interested and sometimes they aren’t. I will keep you posted as well and will be seeing the neurologist soon and if she might have some ideas or if it’s unrelated. I’m with you too and feel the same way about memories short and long term/ forgetting details and remembering others. It’s tough but we will make it through one step at a time. 💜

[DRunnerchick in reply to JennaShi]

JennaShi- my frozen shoulders happened about 18 months apart. The first one was while I was waiting for my first appointment w/rheum and then dx’d w/ RA and later undiagnosed (most of us have risen that train at least once). I had PT for that shoulder for 9 months and was about 98%. I have full range of motion now but it pops and clicks when I roll over in bet and I have some arthritis (not sure what kind because my inflammatory markers never increase even when I have obvious swelling everywhere 🤷‍♀️. My left shoulder has also only had to have one injection (less is better, steroids do have detrimental effects on the bone…) and 5 months of PT. I knew it was going to be hellacious so I powered through it and got done faster. I think I had a better PT too.

Doing okay. Finally got rid of my headache after 200 straight days. Tomorrow I will take my third Aimovig injection. I still fight all the other things on a pay as you go plan until we’ll, you know…the SPS, no one really knows much about it so it’s all really just a crap shoot anyway. Nothing is approved so everything is subject to approval by insurance here (always denied first!) I consider cynicism “the Force” and never let one what I do or do not know. 🤣🤣🤣

You take care!✨😘

[JennaShi in reply to DRunnerchick]

Dang, 18 months apart, so as you’re doing well with one, the other decides to cause some trouble; I’m sorry. It might’ve been a small blessing in disguise that they both didn’t freeze. That probably would’ve been a terrible mix for every day life, I’m sure one at time was too though.

My shoulders pop and click too if it makes you feel better.. haha then again so do my hips! 😅. It’s almost a musical dance as I go about my day and depending the temp, it may be more often. Do you think it’s a hyper mobile situation joint kind of situation?

And speaking to your joint swelling, have you considered being RA antibody negative? I’m in the same boat as far as low antibodies go, although I don’t know about you but wonder if meds like Hydroxy or other.. keep antibodies low? Are you on any meds like that? The body seems so complex, and if they’re not sure, it can be tough to figure out if there's not alot of info on the web.

I didn’t know steroid injections can be detrimental, that’s good to know. That’s a great mindset as far as PT. You’re a strong person and it sounds like you’re in it for the ling haul and Pt sounds like it’s helping improve your mobility. I guess hyper mobility is counter to what’s happening but it’s still an idea to rule out. I will be going to PT as well, hoping to strengthen some joints that sublux and maybe they can help with the knee situations.

That’s wonderful that your headache is finally gone! I hope you get out and celebrate. Man, 200 days is rough and I feel for you in combination with everything else that you go through on a daily basis. Yes, insurance can be very stingy when it comes to paying out, even if you have good insurance and it can be a headache in itself. I’m dealing with a similar situation with a family member’s therapy benefits. One thing I learned is how important it is to have the diagnosis code in the explanation box (forget the name), because it doesn’t matter if it’s on the next page (superbill) 🤨. I hope you get it sorted out and they help you pay for what you need so that you can continually get that care you need. You have a great attitude, and are inspirational. 🌸

[KayHimm]

Good to hear from you, Jenna! I don’t have much to add or offer except to say I just learned autonomic neuropathy and fibromyalgia may be caused by autoimmune CNS dysfunction. This neuro stuff is so crazy. All this time I thought it was all part of the peripheral nervous system. I wonder if what the doctor is saying is the fibromyalgia is a CNS feature. People tend to feel dismissed regarding lupus with fibromyalgia but it may be we just aren’t understanding the problem.

Hope I didn’t confuse you more! Sounds like you are getting treatment for your symptoms and taken seriously.

xx Kay

[JennaShi in reply to KayHimm]

It’s good to hear from you Kim! How are you doing these days?

Wow that’s crazy, can ai ask if you can share your source? I would love to read more. I think I heard about chronic fatigue syndrome showing up in blood tests in new studies. It’s so exciting to hear that they are seeing evidence of these things and that more and more realizing we’re not crazy afterall 😆. I agree, but they’re starting too understand a little better, yay! Yes, some and some not so much, but it’s progress and I’m so glad that I’m not where I was two years ago. Thank you!

[KayHimm in reply to JennaShi]

Doing well, Jenna. Just started adderal to help with issues related to lifting heavy objects. This is all part of the autonomic dysfunction. I have, like you seem to have, doctors who think out of the box. I joke that maybe I will be weight lifting and running marathons soon!

This is such complicated stuff. I admit I get most of this neuro stuff wrong. 😩😩

In the end, let’s hope we have good neurologists who try to solve problems. There isn’t a lot that of evidence based medicine with neuro stuff. Keep sharing!

😘😘 Kay

[JennaShi in reply to KayHimm]

Wow that’s awesome, I hope it helps and you can lift things better and build more muscles to support your body and it’s needs. I hope hope to hear one day soon that you’re running marathons! I’m so glad you have Drs. who are trying to help you by figuring it out (or doing the heavy lifting).

I did look up Fibromyalgia and autoimmune and it seems that they think it might be but still in the works. I do know the glia is what’s inflamed and have an article she gave me. One day Soon I will upload a picture. It would lake sense. As far as my vertigo, I believe it’s being relieved by the Hydroxy as i no longer have symptoms or very rarely. Fibro being autoimmune would make sense. I used to watch brain on fire and cry because it wasn’t exactly the same as my issue but it seemed somewhat similar because there are days where my brain just doesn’t work right: can’t find the right words, or they’re mixed up or slurred. And my body aches in so many different areas and calf muscles are the worst as times and others but I could formulate, rewrite and type better than saying things. It’s so frustrating and weird. But am so thankful for the drs who have helped too.

[KayHimm in reply to JennaShi]

You keep fighting Jenna! 🥊🥊

[honeybug]

Hi Jen 👋👋👋🤗Soooo sorry about all you’re going through hun. 🥰

Re: steroid injections

I have gotten multiple especially in my thumb/wrist joints.

Ideally if helpful they will reduce inflammation and allow function of the affected joint(s) again.

If not successful to continue would destroy tissue/bones and should be stopped.

Oh I’m in Michigan USA have a fabulous Hand doctor.

After he gave the injection that hurt SOOOOOOOO bad…was instructed to ice injection site 15 -20 minutes then 30 mins w/o ice and repeat for the rest of day.

Day 2 if needed follow same protocol but with heat instead.

After therapy keep affected joint in a brace and limit use.

If it’s a leg use crutches keep knee/ankle in brace. Using brace for 2 weeks post injection.

Call Dr. with update if problems occur.

Worked great until it didn’t. Next option is surgery which for me isn’t an option anymore as I’m now a severe diabetic too.

So it’s still possible for you to use icing therapy for a day then heat the next day to see if it helps.

Rule of thumb for many injuries is ice therapy followed by heat therapy (unless you cannot do one or the other).

I hope you will recover from your injection/joint issues soon sweetie.

Best wishes hun.

Much love and prayers.

EJ ❤️‍🩹🤗♥️🥰🙏🕊🤝🌿🌸🦋

[JennaShi in reply to honeybug]

Hi EJ, thank you, life sometimes isn’t easy and we learn to deal and manage.

That is wonderful that you have suck a great Dr. helping you through the process and MI is beautiful, I’ve traveled through and stayed in Traverse City for a little bit.

That’s good information to know with icing and braces, I’ve been thinking about the braces for a while now! I’m going on 9 days including the day of the shot and the swelling has finally gone down and so has the pain. But still feel pressured and swollen slightly. Oh my gosh yes, the shot part is painful I agree! I can only imagine how it would feel in the hand 😬. I’m sorry it’s no longer help you and surgery isn’t an option, what will your next plans be?

I don’t know much about diabetes, is it because of losing blood during surgery that you can’t get the procedure done? I hope that you will find something that helps relieve the pain.

We’re not sure about whether my joint is being attacked by lupus or due to past hyper mobility injuries. But I can say I’m grateful my Rheumy saw that I was in early stages; however, my lupus antibodies have always been low so it’s seems more of inflammation due to past injuries, I think and my labs have been looking great. Hoping regardless it will help in the long run to decrease the inflammation.

Please take care of yourself and many hugs🌸 🌺