Sciatica nightmare

Posted by joy75 @joy75, Jan 4 10:07am

Hello everyone,

First of all, I wanted to let you all know that each and every one of you have all my empathy for what you are facing everyday...

I actually registered here quite awhile ago, but the irony is I have been in too much pain most days, while also being plagued by some kind of nebulous equally debilitating chronic fatigue to even compose a post...

But I am on this board seeking support for what I have been enduring now for over a year.

I was diagnosed with an L5 herniated disc with spinal stenosis resulting in bilateral sciatica after an urgent MRI which ruled out cauda equine syndrome.

(6 months before being correctly diagnosed a doctor told me it was "just" somatic pain, and did no investigation.)

Anyway, most days the pain radiating from my lower back into my legs and right down to the soles of my feet has been debilitating, to the point I will have to hire a homemaker to come and sweep and mop, do my laundry, and clean my bathtub as it is so painful to bend from the waist.

I was initailly taking pregablin,with no relief, and horrible side effects.
Could not walk properly, had a few falls, double vision.

Now i am on 400 mgs of gabapentin which seems not to touch my pain either.

I am also prescribed 1000 mgs of acetominophin up to 3 times a day, but since it is like a sugar pill, I rarely take it.

I have been to the ER twice when the pain was too intense to bear.

The first time, I had the MRI and was sent home with a script for naproxen, which I have found can even hurt my stomach when I take it with food, and as well it too does really nothing to alleviate my pain.

My doctor referred me to a pain clinic months ago, but the waiting list is insanely long.

The second time I went to the ER, the doctor was very empathetic and validating, and gave me a short script for oxycodone, of course with no refills, but for a few days I was blissfully pain free.

I was referred to a neurosurgeon who said there was nothing he could do...

In the meantime I have spent hundreds of dollars on osteopaths, massage, acupuncture, and all manner of useless topical stuff to no avail.

I know I need to excersice more, and I stretch several times a day, have started walking which supposedly ought to help, but my heels hurt when I walk.

I am going to be 51 this year, but already use a cane.

I also have a myriad of mental health conditions which my pain is exacerbating.

I cant really afford it, but tomorrow first thing I am going to make an appointment to start physio.

(I am leery of chiropractic, but if all else fails I suppose I might try that too.)

I never learned how to swim, but I have read to even walk frontwards and backwards etc in a pool can be helpful.

As I write this, my back, glutes, legs and feet are absolutely throbbing.

Forgive me for whining, I know so many of you are trying to cope with far worse, but I feel so isolated and needed to reach out here...

I am Canadian by the way, so hope ok to be here, I respect The Mayo Clinic a great deal...

Thank you for reading if you have, and sending you all much compassion.

Interested in more discussions like this? Go to the Chronic Pain Support Group.

Profile picture for heyjoe415 @heyjoe415

Thanks for sharing Pedro. Seven surgeries, yikes you are a solider!

To your point, it is up to us to learn as much about our condition and what the remedies are. AI makes that much easier. This allows us to have meaningful discussions with our surgeons and physical therapists. It is time well spent.

I wish you all the best on your upcoming surgery Pedro.

Joe

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@heyjoe415 Thank you for your kind words of wisdom. I completely agree. I also found it necessary to expand my knowledge of symptoms and available treatments in order to have more informed discussions with my doctors.

Unfortunately, when I was referred to a spine specialist surgeon, he recommended a double TLIF. The idea was overwhelming, so I declined it and only had one fusion done. Looking back, that was a mistake. Now, I am returning to complete the procedure that was recommended to me back then.

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That's terrible.
I am an 83 yr old male. Nil arthritis. nil pain anywhere. I still run, walk and swim.
Have always enjoyed sun bathing. Became aware of vitamin D in my early 40 tees. I suspect that as a Canadian you have been D deficient. Seriously, you should get D measured. D has a 1/2 life of 2 weeks. Take D supplement and go to tropics. But DO GET MEASURED. Most people are deficient because of indoor working. Good luck.

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Profile picture for jason321 @jason321

@jackiet
Hi, I'm currently high tolerance but better than anything else I've tried and that's a lot. I'd sooner not be taking anything but the pain gets too much to ride out, they also help with sleeping.

I'm very interested in what you say about your digestive problems, could you elaborate?

I ask because I'm suffering chronic abdominal pain just now, had it almost 2 years. I'd been off opiates for a good while when it kicked off and had left it for weeks thinking it would just pass before going to the doctor.

He sent me to urgent treatment at the hospital and they found I had very high blood sugar which was a total shock to me as I've never been overweight and was (until the sciatica) a physically active person. So I have Type 2 diabetes, last blood test showed sugar was down but still above normal. I take Metrformin for to help with that.

My CAT and Ultrasound scans showed nothing apart from compression in lower spine, thats obviously the sciatica problem and I'd already had one for that years ago but this abdominal thing is a mystery.

My doc referred me to a Gastroenterologist twice and I've been knocked back twice due to them not finding anything obvious in the scans. I'm on my second stage complaint to the hospital. I had to crawl out of an MRI because I got claustrophobic and I'm currently waiting to see if they will let me have one sedated.

It's shifted from side to side over time, felt like being cut or burning now its a dull constant ache right in the middle. Skin is also very sensitive. I'm on Zomorph now for that pain as well as sciatica but like I said I'd had started before taking them.

Doc says it's just the diabetes effects, age, constipation with the tablets etc. At a total loss as to what's wrong with me. Had all the usual blood tests, nothing showed up.

This is driving me up the wall. I watch my sugar intake, keep well hydrated, tried all sorts of diet changes, nothing works.

Sorry for ranting on, just wanted to give you a clear picture and see if you had similar.

What is/was your experience with stomach probs?

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@jason321 Hi Jason..... I'll try to explain my situation as best I can, but I'm a little confused about yours. I think you say that you started experiencing abdominal pain after you had been off opiates. If that's what you said your issue might differ from mine, as my abdominal problems happened while on opiates.

A suggestion--Did you know there are open MRI machines for people with claustrophobia? I don't know where you live, but you can find them in Buffalo and in the Southern California area.

I wonder--Wouldn't a G.I. doc recommend having a colonoscopy? Can't a colonoscopy detect causes of abdominal problems?

My situation seems far simpler. For starters, I am very elderly and have had digestive problems all my life--IBS, GERD, low tolerance for dairy and sometimes gluten, etc. I started on opiates about two years ago I think, for the pain in my lower back caused mainly by arthritis and disc degeneration. At the beginning, on low doses, I didn't notice anything worse than usual. It was only when I was on 30 or more mg of Percocet a day that I started having severe G.I. problems, not constipation exactly, just stomach cramps, sometimes really sharp, every damn morning. Much time spent in the bathroom.

I have titrated down to 15 mg Percocet a day and I am starting to feel much better. That's about it!

You do know that Zomorph causes abdominal pain.
Sorry I can't be of more help.

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Thanks for getting back to me.
I was just curious to see if you were in the same boat as me and had similar pain. I've had this nearly 2 years and don't even know what it is yet, neither do the docs! I've been referred to specialists but the hospital rejected the requests due to the scans and blood tests not showing anything, hence my complaints.

I'm just trying to relate it to something and intend to put it out there and see if anybody can recognise the symptoms under stomach probs.

I'm glad you're doing better now.

All the best.

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Profile picture for jamessaxo @jamessaxo

That's terrible.
I am an 83 yr old male. Nil arthritis. nil pain anywhere. I still run, walk and swim.
Have always enjoyed sun bathing. Became aware of vitamin D in my early 40 tees. I suspect that as a Canadian you have been D deficient. Seriously, you should get D measured. D has a 1/2 life of 2 weeks. Take D supplement and go to tropics. But DO GET MEASURED. Most people are deficient because of indoor working. Good luck.

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@jamessaxo

Thank you, yes, in the past I have been vitamin D deficient, and have been taking supplements for years, along with calcium as after a lifetime suffering from anorexia nervosa, I now have osteopenia.

Good reminder for all of us to have our vitamin D level checked, thank you.

How wonderful that you are still so active!

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Profile picture for heisenberg34 @heisenberg34

@heyjoe415 Joe, you have a great story. Thanks for sharing. I was never a runner but took up cycling...nothing competitive. 30-50 miles on a picturesque trail. Easier on the old back. I currently have a pain pump that I am still waiting to get relief from. I wish many happy, blessed, and joyous years ahead.
Chris

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Thank you Chris, and I wish the same for you.

Cycling 30-50 miles is some significant mileage my friend. Good for you. I've taken to stationary cycling (spinning). I get the endurance rush I used to get from running, and I can't bike on the road, ironically, because of my lower back. Too many bumps even on pavement.....

No regrets here. I've had a wonderful life and I am grateful.

(BTW love the username "Heisenberg". Maybe I should use "Schrodinger.")

Joe

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Thanks for your post and kind concerns for others here. All dealing with pain, uncertainty about what's causing it etc. Also a Canadian and grateful Mayo Clinic has this great space for us.

Have you been given pain meds that help yet? Hope so. Any relief is helpful. Sorry you're going through this difficult time. Feel free to update & ask questions here as others might have similar experience and tips. All the best.

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