From Swimming To Running; Adjusting to the Pandemic

[daisymae]

MY LAST EPIDURAL DID NOT WORK AT ALL; an update:

so two weeks ago, I had a very intense epidural into the L2 and L3 areas of my spine. I only had about 24-36 hours of elevated BGs and barely had to make pump adjustments or change my regular insulin regiment to accommodate the steroid. Strange.

Long and short of it, it did not work one iota. And the injections themselves were terribly painful, especially in the locations of the injection sites.

I saw the specialist again for a follow-up this past Monday. Now I am scheduled for another set of injections right into the nerve root itself at the base of my spine on the right side. All he’ll be injecting is Lidocaine (I believe). And this has, apparently, a very low success rate. Why bother? Because it is my last possible option before delving into cutting me open and removing parts. Ugh. But if this works, it could be absolutely wonderful, so I have nothing to lose. I mean, I’ve tried everything else (including acupuncture) If this does not work, the next step is performing something called an Appellation of the nerve root where they burn off a portion of the nerve that is being pinched from my spine to make some room and create enough space that the pain is relieved. Unfortunately, from what I understand, this is like putting a bandage on, bc the nerve ultimately will grow back.

I do, however have two spinal neurosurgeons lined up for down the road. I am not a betting type of gal, but if I were to have to place money on the outcome, I would bet on the surgery taking place.

I have not been chiming in and delving out the moment by moment, day to day experiences I’ve been going through simply bc I have been so utterly depressed and exasperated that I couldn’t get my thoughts together enough to share them with the FUD community. Today I am living in a place of acceptance and peace of mind and spirit, so I thought I would take the opportunity to share this all with you.

I know everyone is in my corner rooting for me, and I cannot begin to tell you how wonderful that makes me feel. It really makes all the difference knowing that you guys have my back.

And btw, just an aside, in case I did not remember to report this, The Gabapentin I tried taking did NOT work for me. I began getting terrible and frightening side effects and I had to titrate off of it ASAP.

signing off,

DM

[Chris]

Hang in there @daisymae, I (we) are rooting for you to find a path to pain free living

[JessicaD]

I’m sorry @daisymae. I’ve been thinking about you and just hoping you’ve been too busy off whooping it up, drinking tequila and eating chocolate to check in! I’m sorry the current treatments haven’t worked. Interestingly, I did just have a lidocaine injection in my eyebrow/forehead as I went to my regularly scheduled migraine/neurology appointment with a migraine and my dr wanted to try a “nerve block.” It worked in dulling the migraine, but only for about 5 hours.

A few years ago I did have a newer procedure for migraines called “nerve decompression,” where the nerves that generate out of my eyebrows were either “decompressed” (the bone/tissue around them removed to give them space to be) or removed so that they didn’t fire and hopefully didn’t cause migraines. It worked for me for awhile.

I am very, very, very sorry that you are going through this. It is bullshit (sorry if that gets me demerits on here). It truly is. I wish there was more that we could do to help. Please keep us posted and I will continue to keep you in my thoughts. Please feel free to send me a message if you want to talk nerve decompression or anything else. xoxo - Jessica

[Trying]

We are definitely rooting for you to get back your healthy and pain free life style. I have been thinking of you and was hoping, like JessicaD, that you have been enjoying some nice walks, and delicious grilled cheese sandwiches! I know that will happen for you. You are so brave, intelligent and persevere, you will overcome this and get back to swimming, maybe even before the pool has opened!

[Beacher]

What an ordeal, @daisymae! Hang in there. You are an inspiration more than you will ever know.

BTW, glad you got off Gabapentin. It is evil, as you discovered. My partner was on it briefly for TN and it turned him into a zombie. A zombie who twitched and forgot his words and had nightmares. Classic “cure is worse than the disease.”

[daisymae]

@Beacher

Gabapentin. It is evil,

Beacher, OMG. It truly was a nightmare. I had exactly the same symptoms as your partner. Tremors, confusion, forgetfulness, spaced out, and exhausted. I was really hopeful at the beginning bc I have a few friends who take it without any side effects and much relief. Bummer.

[JessicaD]

So, as a moderate counterweight, I will say that when I was down and out with frozen shoulder, gabapentin truly may have saved me. Gave me modest relief from the pain and allowed me to sleep. That said, I was only ever on 300 mg/day. It bothers me that I’m still on 100mg/day, but I am still dealing with FS and every time I take that 100mg away, the pain ramps back up. So, if anyone is ever at the point where it is recommended to them and wants to talk about it, I’m also here as a resource! (I am very sorry it didn’t work for you guys ) Jessica

[daisymae]

@JessicaD

, I was only ever on 300 mg/day.

I was doing fine at 300mg but had no relief. I was titrated up to 1800mg and still got no relief. (and I have diabetic neuropathy in right foot and hand which it should have helped as well but didnt).

I had what was called “foggy brain” and could not put a clear thought together and was forgetting very simple, basic things (like did I Bolus for my meal? Did I even eat? When did I take my last Ibuprofen? What day of the week is it? Who am I? )

Sorry to hear about your FS. That sucks. Pain just sucks period! You’ll be in my prayers.

[JessicaD]

That sounds horrible and pain IS THE WORST. I so hope you are able to find relief soon. xoxo

[daisymae]

@Trying

enjoying some nice walks, and delicious grilled cheese sandwiches!

Well that I have definitely been indulging in!!! (however the aftermath of those “nice walks” is miserable.) I really pay a high price for them, but if I dont get out and move my body regularly, I just feel too depressed and riddled with self-pity. I definitely need the challenge, however painful. ts been one heck of a year!

But speaking of grilled cheese sandwiches…On Monday, after my Birthday, we are going to my other favorite food haunt : Bare Burger. I am soooo psyched. Perfect burger on Brioche roll with a double order of Guacamole, Tera Chips, and sweet potato fries. Ecstasy.

We’ve been patiently waiting for them to re-open (bc of Covid), and now that the weather is nice, we can sit outside and thoroughly enjoy ourselves. Total pig-out

(I’m going to also try and get myself a super large slice of Key Lime Pie from this restaurant in the City. I am praying that they will accommodate me on that one. Its the best I’ve ever had.)

[Trying]

Happy Early Birthday, @daisymae !! Sounds like a wonderful way to celebrate, too. The Brioche roll burger (though I’m vegetarian!) and the sweet potato fries sounds delicious!!

[Tapestry]

I’m sending huge … albeit gentle … hugs to you, @daisymae !

Happy upcoming birthday too! Enjoy!

[daisymae]

AN OMG REPORT:

Holy cow. After all of my steroids, treatments, pain and stress, I was anticipating an A1c of about 5.7%. Well I just got my latest results of my blood draw from yesterday; believe it or not, my A1c was 5% !!! my fasting BG was 90.

ON ANOTHER NOTE, BACK TO MY LATEST TREATMENT:

On Wednesday, I had something called a Branch Block. It was a total of 6 spinal injections, L2, L3, L5 . I screamed through the entire procedure. It was the MOST painful of anything I have ever had before. Even worse than all of the epidurals put together. I had an excruciating pain that radiated from my lower back, down into my tushy and down the back of my thigh. I was certain that something had gone wrong. I could not stop crying. My husband said in our (almost) 28 years of marriage, he has never seen me cry like that before. I was wailing (what was I thinking when I put on mascara that morning before leaving the house for the procedure??? ). After the procedure (about 1/2 hour, totally awake), they put me into the recovery room and wrapped me in icepacks. The doctor told me it went successfully, and that if I did not experience SIGNIFICANT relief from my pain by 8pm/10pm that night, the procedure was unsuccessful. Well guess what? I was actually in MORE pain by the evening than I had been before the darned procedure, and I have continued to be in more pain. I am popping those F-ing Percocets every 4 hours and wrapping ice belts around myself (quite the frozen experience) 20 minutes on/ 20 minutes off. If it would b helpful, I would even sleep with them on. The pain wakes me up during the middle of the night and disrupts my sleep. I am beyond frustrated. And a feeling of hopelessness and depression is settling in. I have been going through this since last September, and I am hanging on by a thread.

I see my pain management specialist next week to decide how to proceed. It seems that there is no other option than full out spinal surgery. God knows I’ve been a trouper and have tried every other possible avenue.

I am so beyond grateful for all of the support I have received from all of you on FUD. It has literally held me together in ways I cannot even express.

If there is anyone out there in our community who has had spinal surgery, I would greatly appreciate it if you could post it. All the details. I would love to know what I am getting into. SO please dont be shy, and please share your experiences!!! SOS.

singing out,

DM

[Mariethm]

Oh, daisymae, this is horrible! I’m so sorry that you continue to experience such pain!

I have had 2 spinal surgeries, (spinal fusion and laminectomy, both on S1 L5), but that was before diabetes, so I don’t know how much I could help in that aspect. The depression beforehand was unbearable, and quite honestly traumatized me more than the subsequent surgeries.

The laminectomy was the most painful recovery that I ever experienced with any surgery, although it was worth it. The fusion was less painful and took less time to recover from than my wisdom teeth being pulled. If you would like to know anything else, just ask…

As always, that you find relief!

[daisymae]

@Mariethm

The fusion was less painful and took less time to recover from than my wisdom teeth being pulled

This is very good to know!!! When you had the spinal fusion, which part of your spine did they fuse and exactly how did they do it? Did you have to have any bone marrow extracted from your hip/and or other part of your body and then placed into the spine? Did you have to stay in the hospital or was it performed as an out-patient surgery?

The right and left lumber spine are riddled with arthritis. I dont know (yet) exactly what they will have planned for me yet.

[Mariethm]

The procedure I had was Axialif (here’s the overview) Spinal fusion: Axial Lumbar Interbody Fusion (AxiaLIF) | Mayfield Brain & Spine, Cincinnati, Ohio
Nothjng was taken from anywhere, I just have a pin and some screws holding me together. My xrays are super awesome!
I’m sure there’s a slew of newer procedures. At the time (2008), it was cutting-edge. No pun intended.
In-patient procedure, I think I stayed 3 or 4 days. And the last day I was walking fine.

The best advice I can give you, is find a spine dr that you really trust. And get 2nd and 3rd opinions if you need to.
I’ll try to find the spine forum I was on way back then, they had a lot of knowledgeable members…

[JessicaD]

Oh DM, this is awful. You do not deserve this. You shouldn’t be in pain like this for a minute longer. I hope you and your pain management specialist are able to figure out something to help you in a big way for the short term and that spinal surgery (is it fusion that you are contemplating?) is the solution for the long term. Both my parents (in their 70s) have had spinal fusions and I would be happy to put you in touch with them if that would be helpful. They are empathetic, talkative Midwesterners who would tell you anything and everything you’d be interested in hearing. I am thinking of you and sending all my best thoughts. xoxo - Jessica

[Trying]

First, congratulations on your excellent a1c result! Fantastic under any circumstances!,

I’m so sorry you continue to be in pain. I wish they could uncover the root cause of this. You have been a trooper and have tried everything the doctors have advised. I know it isn’t comparable to what you are experiencing, but I mentioned to you before that my dog was in severe, severe pain for which she underwent spinal surgery. It took a few months to recover after the surgery but it worked. She had no pain and could walk normally.

My thoughts and prayers are with you, @daisymae.

[Eric]

DM, I can’t even begin to express how sorry I am about this.

Part of me feels responsible. When the pools were closed I was encouraging you to run. I feel like that caused all of this, or at least contributed to it, and I’m so sorry. I truly am.

I really wanted you to be able to fill the gap that was missing when you couldn’t swim. This breaks my heart. I wish I could fix this.

The only comfort I have is that I know how tough you are.

[daisymae]

@Eric

Part of me feels responsible.

Oh my goodness Eric, you are the farthest from responsible. You even got me into buying those Stability shoes! But Yes, the doctors have said that the running was absolutely the worst thing I could have done for my body as it was a trigger for all that was (already) wrong with my spine. And of course, when I began the running, I did so in the crummiest of running shoes imaginable

I know how much you encouraged me to find something to fill the non-swimming gap, and for that I am extremely appreciative. Its just a shame it didnt work out, because I truly loved doing it. I have yet to find anything that brings me the joy and absolute peace of mind that exercise brings.

And just to add, that my doctors (yes, all of them) have told me that when I do recover from the pain that speed walking is an excellent choice for me until the pool reopens and I can return to my great passion!!!

PS: I know how you have shared with me that part of why you run is because of the benefits it gives you emotionally and mentally. This past year I have watched how my peace of mind has withered. Lately I just feel defeated, depressed, and filled with deep sorrow. My little body thrives upon the endorphins of intense exercise, and although I am still able to get outside and take walks (some longer or shorter than others), the walking itself is excruciating. I just push through the pain bc of the mental relief I get out of it.