Taking a different road today and going down the positive vibe road.
Waited a week to make sure I wasn’t premature in my happiness. Went last Wednesday for bilateral fluoroscopy guided steroid L5 epidural for my back pain.
I was definitely nervous but the physician doing the procedure was so nice and warm that he made me feel at ease. We looked over imaging. I have modic 1 changes which are highly debilitating when compared to 2 and 3. It usually indicates ongoing inflammation and revascularization. Luckily, modic 1 changes also respond best to therapy such steroid injections and surgery. So my glass is half full.
Well, it worked. My pain is lessened by at least 70%. I had little to no pain from injections. I also think I’m benefiting from the 250 mg of solumedrol he shot in there. I definitely absorbed some systemically. I can finally put on socks and pants without any special contortions. I can dress myself in under 2 minutes now!!!!
The little wins in life mean so much to me right now. Hope y’all are catching some little wins too. I definitely needed one.
💜🦋💜
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Jmiller623
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I'm so pleased for you 👍👍👍👍 Although of course not pleased that the scan shows you're in trouble, but you know that on one level already I guess because of the way you have been feeling.
And I hope the pain load you have to tolerate keeps on easing up. You so deserve a break.
I need pants/compression socks something bad esp compression ones for my legs or they swell like the dickens. Everything I own from waist down is typically form fitting for this reason. I’ve never been able to wear dresses (esp short ones) comfortably without nylons because my calves swell so bad. I even had a friend some time ago comment on how fit I was but my calves are like undefined balloons. That was at least 10 yrs ago. Little did I know that I was an autoimmune bomb waiting to happen. 😂💣🧨💥
Hi J good to read a post from you. Really pleased the injection has given some relief from your pain .I hope it is long lasting 🤞.i can now hobble around the house with 1 crutch instead of 2 hope that counts as a win lol.Sending you gentle hugs across the pond to ya 🤗 xxxx
Thanks SML. 1 crutch down is definitely a small win!!! I no longer need to brace or twist sideways to sit down. Never realized how much my back affected me.
Personally I find back pain the most debilitating, can’t get in the bath, dressed, hoover, wash the floors, change the beds, paint my toenails, have …… you know what! 😉🥲
Oh pants is all I do. I only shower and have a teak bench in there to sit. My husband carries my laundry, does most chores. Laundry and stairs are my kryptonite. I am now at a point where I might hire someone to clean for me monthly because he’s not as thorough as I’d like. 😂 I do a lot of slothing throughout the day. Between pain and NO energy, it’s more like a slug. 🦥
Re nails: I can’t tell you the last time my nails have seen polish. YEARS! I 100% couldn’t do this at all. But there are these things called Color Street and it’s stick on nail polish. Lasts for weeks. My mother in law uses it all the time and gave me a few. They are amazing!
Fantastic you don't need those now.i will need crutches for abit longer after falling down a pothole in a grass verge while out with youngest dog...both of us we rescued by ambulance 🤦♀️ x
Oooooooh noooooo SML. What an ordeal. Although it does make for a “good” bad story. What did the ambo do with the pup?
Our pets abuse us!!! 🐶 I’m tired of it! 😂🤣Baxter broke my finger when the leash twisted it as he was excited by the sight of other dogs. He was but a puppy.
The route to hospital passed my street so they took a detour and dropped marley off at home.my son got a shock when an ambulance man walked through the door with the dog.id left the eldest one at home as she was struggling .they then took me to casualty..you've got to see the funny side of things J .Oh I bet you cursed him until you saw his puppy dog eyes lol xx
Great that you feel better and thank you for the article. The report on sophisticated imaging done on my spine referred to Modic 1 and I thought it was minor. Enjoy this good moment!
Thanks Joaclp! I did too until I talked to this PMR doc. I can’t even lean forward the slightest to do a nasal saline rinse. He said this was very characteristic. And my rheum just says it’s a general arthritic process. At 37!!!?
There are tons of papers on modic 1 changes. There is even a theory that ppl with such changes should undergo antibiotic therapy because changes are indicative of great bacterial breeding zones. It definitely means something IMO.
What else is there to do but PT and maximize pain relief regardless the cause. I’m going to try PT again. Anything to prevent this from coming back. I pray the relief lasts at least months.
Again, thanks for info re modic 1. I happened to have an appointment with my spinal specialist at UVA today and asked him about what it meant to him in reference to the CT scan he ordered. He said, oh I just take it as a given that everything that is going on with you is autoimmune in one way or another! I wish my rheumatologist were as good as this neurosurgeon. Hope you are still feeling relief!
🤩❣️👏👏👏👏VERY HAPPY FOR YOU...+ for everyone leading the way forward in figuring out these aspects of pain science: makes me wish I were 40 years younger when this was so much less well understood & I was being stone-walled despite XRAY & MRI evidence of my scoliosis, kyphosis, facet joint syndrome etc etc....🤷🏼♀️ In 2015, after 3 years on hydroxy for infant onset lupus, one of the first things my rheumatology specialist lupus nurse told me when I reported with utter amazement + delight that right from the first doses myco + pred were helping modulate my recalcitrant chronic spine pain was: we know that wherever there’s inflammation of any sort, lupus rushes to join in! 🤗💞💞💞💞💞
Thanks Coco! As always, you’re (or the specialist nurse) right on the money with that last line and research agrees with you. I just found it super odd that my back even had any problems given my age and that I’m relatively in okay health minus lupus. But you’re right, only takes a nidus to bring the lupus fun!
🤗 cannot find words to say exactly how much these studies MEAN to me...after all those miserable decades with my infancy lupus diagnosis & DES-Daughter birth defects never mentioned/acknowledged & all my medics trying to pin my multisystem chronic pain issues on the early spinal injury, hypermobility, career choices etc etc felt so peculiarly unreasonable (how can you blame all the multisystem inflammatory conditions + lymphopenia + complex persistence pattern infections inc septicaemia on spine injury etc?)
Only my husband never bought into this bizarre theory,: but back then there was no internet & we lived deep in a farming region + I was so disabled by all the illness, that holding down a job & travelling to research my manifestations were never going to combine. Instead I joined a U.K. support society called BackCare for folk with spine conditions...they put out a decent monthly mag which helped me figure out what to ask for from the NHS & which sorta body therapy to access locally. But by then I’d been a doing yoga & meditation for years...and a very caring, intelligent aunt put me onto the Alexander Technique (without all that self-help, I could never have held a job).
Hurts to remember all that...but, on balance, I had a good life, albeit in constant multisystem pain 🤷🏼♀️. And now my medics have helped frame a narrative that makes sense of it all to the few trusty true friends & family who’ve stood by me through thick & thin...And the internet exists 🥳, + enquiring, research-orientated fellow-🦓s like you are helping me understand more & more & more. Am very glad you’re here 💞💞💞💞💞
What absolutely marvellous news! Yes we all struggle with things that "healthy" people don't even consider. Your example of getting dressed is a good one.We go through so many medical procedures, invasions and assaults on our bodies, sometimes with little benefit. So I am delighted to hear that your treatment paid off. Enjoy it!
I also had some good ju-ju today. I have felt awful since my first covid jab but at 2pm today my head came out of a fog,my body came out of my bed and I was able to do 6k steps aided by my treadmill, changed my bed sheets and do a wash. Just catching up with the domestic chores and feeling able to partially function is good.
Let's hope for more good vibes for all, glass half full and unicorns that fart out rainbows!🌈🌷😂
I can’t laugh hard enough at unicorns farting rainbows. All I needed for the day HT! Thanks so much. Happy to hear that you’ve also won a small battle. 👏👏👏 I don’t realize how crippled I am but my husband is always sure to remind me…. not in a bad way but a protective way.
Its so much better although probably more difficult to feel positive with those little wins🌈 when you have other health issues as well. But to focus on the good outcomes is a great way to be😃keep those positive thoughts & vibes going😘
Fabulous news for you J🤗 isn't it great when something actually helps? 🙌Always a gamble with us as to what kind of effects certain treatments will have n I have everything crossed that this treatment gives u some relief for some time 🤞
I bought a curtain online for my bedroom window..when it arrived it was ok width wise but was far too long so I cut the bottom bit off thinking well that was a bit of a waste of money Kat!! 😔😹
However last week I decided to see if I could do a bit of handsewing n make a curtain out of the bottom bit that I'd cut off 🤔 so I got my sewing box out n gave it a go..haven't been able to sew for years..threading a needle was a definite no-no..but I'm happy to say I did it!! 🙌I now have a new curtain at my front door!! 😁
Your hubby sounds great...I have one like that too 😉
Good to see u posting..keep the good vibes rolling 🌈😽😽xx
Thank you 🤗 yes it's net curtain n the butterflies are already in the material. I sewed a hem at the top so that I could hang it. Glad u like it 😁🌈😽😽xx
Lace is expensive over yonder. I remember I bought a ton of it for my mom when I was in Prague. Stores over here just don’t commonly sell it. You’d have to find small mom and pop shop tucked away in an alley where they get their imported lace from family in Eurasia.
At least 70% pain relief sounds a big win to me. 👏🏻👏🏻 So pleased for you J. If it wasn’t for Lupus joining in the fun it might have been an even larger %age. 🤔. You still have a lot to contend with but this is a definite positive. 👍🏻👍🏻 Take care 🤗xx
Glad you’re finding so relief at long last. Please don’t out do yourself. This is no time to take on your Ginger Rogers impersonation 💃🏻 Pace yourself and enjoy the scenery.
I too jmiller wish you a long time with good relief for your pain. As im reliant on these kind of injections to keep going i fully understand how we appreciate the little wins in life too!. I think thats a lovely way to describe it. Keep safe and as well as possible. Xx
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Apparently people with lupus dont need painkillers!!
Gluten intolerance/allergies linked to SLE gut issues inflammation of gut and all over from it.
Silicone and Lupus
Just putting it out there again 
lupus mental pain
