Nerve Pain?
Hi, everyone -
Just a quick question for anyone who may have had issues with this. I had surgery on Monday, November 10th, so just shy of a month ago (today being December 6th).
Yesterday and today, everything from the waist down just aches. I haven't done anything in particular any different than I have been for the last month. Haven't fallen, bent, lifted, twisted, etc. I'm walking sort of like I'm supposed to. It's too cold here right now for me to go outside, but I was told to take six or eight five minute walks per day such that it added up to about 30 minutes per day. I'm not doing any sitting really except the occasional trip to the toilet.
Anyway, yesterday I just ached everywhere from about the beltline down. No upper body problems at all. Not that I have any experience with restless leg syndrome, but in my mind that is what it feels like. When I'm lying in bed, I feel the need to keep my feet and legs moving. It isn't really "pain," especially when compared to all the other pains we've all had or been having. This is more like a burning ache. It's different from the "board nailed across the butt," which I've mostly gotten used to. I haven't had the "itchy back" that I've heard some of you complain about. This is just weird - feels like my legs are weak and they just hurt from the hips to the toes.
Any ideas? The pain medicine doesn't seem to help this much, which is why I think it might be nerve pain and not muscular/incisional.
Hope you are all well. Any and all advice/comments are appreciated. (smiley)
Fifa
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Fifa's Surgery 11/10/14 with Dr. Buchowski
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Originally posted by Susie*Bee View PostDear Fifa - I am so sorry you are going through all these problems. Some do and some don't -- and you just never know. The one thing to keep thinking of is that you will get through this. And I know you realize that. Just keep thinking it when it the going is rough. I'm one of the ones who had an ileus, and I can't remember if I already told you that or not. I went NPO, not even ice chips, for 5 days after surgery (not counting surgery day). I know it seems like you are without nutrition during that time but they are "feeding" you with the IV. (Sure doesn't take the place of a steak, does it!)
I also went through a time period where the room would spin around when I was lying down in bed, but it was at least a few months or more after my surgery and I wasn't on strong pain meds then... and also many, many times when I lay awake for hours during the night, wishing so much that I could just go to sleep. Sometimes those are med related, I think, as right now I'm having that same problem because my neurologist just added a different medication and if something awakens me at 4:00, or at least by 6:00, in the morning (a foot cramp, almost every night) I cannot fall back to sleep for the life of me. Up until I started this new med I could sleep in until 8:00 if I wanted to. Oh well. (sad face). The main thing to keep in mind is that these things will pass and you just need to be patient. It may be some sort of hold-over from your anesthesia also, or just the trauma of the surgery.
I'm praying that you'll turn the corner soon and get the rest you need, your digestive system back on track, that you'll be able to eat the foods you are craving, and that you'll be back on the smoother road of recovery very soon. I think you've just hit several bumps, the main one being that they did not take care of you well at Barnes and sent you home when they shouldn't have. Take care.
I've figured out with me (maybe with you and with others?) - it is just the not knowing. I've been driving myself crazy the last couple of weeks wondering "is this normal? Should this be happening? What the h*LL is this all about?" That's why I'm so grateful to have found you all.
I keep trying to tell to myself that this, too, will pass. There are plenty of you all you've "been there and done that" and you all seem to be doing pretty well. I'm controlling and impatient, and I try to work on being a better person, but it seems like Percocet, Valium, and Oxycontin make my bad personality traits worse. LOL
I had surgery November 10th, so I keep trying to tell myself that it hasn't even been a month yet, and I need to just eat, rest, and relax. There's nothing I want to read, no real comfortable position I can get into, and I think I've watched everything that has ever been broadcast on Netflix.
The yoga isn't helping - I think it is the drugs. Someone should do a study on that one. LOL Who needs Zen when you've got Oxycontin? LOL
These are today's complaints and they, too, will pass. You and so many others have been through so much more than what I'm going through. I' sorry to be a whiner. I'm going to post below about "nerve pain" and then try to get some sleep. I'm going through this insomnia thing - it is as if the Percocet wakes me up every two or three hours on the dot and says, "hey, time to take some more of me!" That's kind of different. LOL
Please take care. I hope you are doing well - gentle ileus-free hugs from Missouri to you! We'll have to swap private stories on that one - I have NEVER been through anything like that before. I've got hubby on standby with the Fleet enemas just in case. I seem these days not to be able to tolerate even half of what I could eat before. Oh, and I'm down 24 pounds, but don't know how many pounds of hardware they added.
Take care and get better than ever! (smiles and hugs)
Fifa
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Originally posted by jackieg412 View PostHi. Fifa, as rough as that all sounds to me it is like the same journey. I remember just being able to eat a single bit of food at a time.like one grape or a single potato. I was thirsty all of the time. And then it was a single sip of something. Sitting was impossible and I paced back and forth a lot. It will improve. A lot of rest yet. Even if you can't sleep for long. The spinning , I would think is coming from the meds. My surgeon just gave me a 2 mg dose of diazepam , I could not keep it down . Medication can help, but it can also be a trial and error type of thing. For me it is mostly error.
Hope you are doing well - thanks a bunch!
Fifa
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FIFA, I had the same emotional reaction after surgery that you describe! My very kind husband had no idea what to do with me. I cried over very small events....like the tears were there just waiting for my emotions to be triggered. Gayle has great suggestions. I'd like to add a few:
- Tell the people that care for you that people on the forum say that it is normal, due to a combination of the enormity of the surgery, the non-supportive time after surgery and your frustration with how you were treated, the drugs you take, pain, sleep deprivation or no period of sleep of 6 hours continuously....and that the crying really isn't about the situation and IT IS NOT ABOUT THEM. Tell them the reaction to your crying that works best for you: like just a quick hug and don't ask why you are crying or whatever works for you. Also, recovery is a good year.....some family/friends think that you should be "normal" after 6 weeks. It gradually gets better over the first 6 weeks, then 3 months, then 6 months, 9 months, one year. Also, sometimes it gets better and then you feel worse...emotions do not just get better every time, so don't get disappointed when you have a setback.
- Do you have someone to talk to that really listens and supports you?
- Don't over think the crying. It just happens and will decrease with time as your pain.
- Reach out to good girlfriends and invite them over to your home....and tell them not to stay too long.
- Get out of the house for even a short while....lunch is great, whatever works for you. Fresh air. Remember a pillow to cushion your back in the car. Of course, you are the passenger.....no driving yet!
- Walk as tolerated every day
- surround yourself with non-toxic people
- is your bed comfy? Favorite chair comfy? If not, change with a topper or more pillows. New sheets. Soft flannel sheets from LL Bean (supima sheets)...think that they have a discount now and always take back returns.
- is your pain being addressed?
- constipated?
- look at self-care options: hair cut, pedicure, manicure, foot and lower leg massage. Do not do a body massage.
- are you taking a nap every day?
- are you eating well? Fresh fruit, veggies, lean proteins
- are you drinking enough water?
- if you have a dog, hug her more!
I promise, promise, promise that life will get better. Give it time. Have patience. Be kind to yourself. Be very kind to yourself.
Gentle caring hugs,
Susan....been there done that, just did that again.....Last edited by susancook; 12-06-2014, 12:50 AM.
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I agree with Gayle, there is a lot of trauma with this surgery and recovery is long and hard. We're in an instant society. We expect more from ourselves than we can manage. Also, as good as family and friends are at first, they do not understand and get tired. Thankfully most will never go through this ----so vent here. We understand!
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Dear Fifa,
I don't think your emotional state is out of the ordinary at all this early in recovery! I agree the drugs can mess with your head and moods a lot, which doesn't help things. Right now you are in survival mode…you have just within a matter of days gone through likely the most traumatic medical event in your life, the closest thing to dying you have experienced. It is just extremely traumatic, the stress, fear, pain, uncertainty, sleeplessness, lack of medical support being booted out of the hospital way to soon, etc. I can completely relate to how you are feeling right now, and I can promise you it will pass.
I really think there is some sort of post-traumatic stress component to this recovery that is rarely discussed, even here. I was somewhat disoriented and delusional in the hospital a couple days before discharge and thought the mean male nurse from ICU was now working in my ortho area and I was afraid he was going to come kill me during the night. I clearly remember these thoughts, and my husband had to go talk to the nurses so he and they could reassure me. I also had a couple of really rough nights in the hospital, probably day 2 and 3, where I was so sick and in so much pain with no nurses in sight that I thought I might literally die. It was terrifying. Once I got home I had some panicky feelings about how my new back felt that were difficult to cope with. I remember walking slowly outside into the moonlight on a cold clear night to look at the stars, and imploring the sky to give me the strength and ability to cope with my situation. I felt so helpless and defenseless. My point is the first few weeks of recovery are hell, the meds don't agree with everyone, and these difficult emotions bubble up to the surface.
What helped me was the passing of time, keeping in touch with friends and family (it always lifted my spirits),and giving yourself permission to experience and process all of these feelings so you can gradually heal. Take it easy and get the very best nutrition you can manage. Drink plenty of fluids, and know this all will improve. Many of us here know how you feel, and we are here to listen. Please post again soon.
Gentle hugs,
Gayle
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Originally posted by susancook View PostHope that you are finally settling in at home. Sending you healing and good bowel movement messages.
Susan
The bm messages helped more than you know. I'm taking not only a Senokot laxative daily but also a Dulcolax stool softener daily. Thought I was developing another ileus a few days ago, but apparently things (knock wood) are starting to normalize.
I will say, though, that I'm going through some really emotional upheaval that has been hard to deal with, and I'm pretty sure it is the drugs. I'm typically on a pretty even keel, but lately, the dumbest things are making me cry. Not just a tear or two, but downright heaving sobs. I'm crying kind of a lot and pretty much for no reason. The other day, I opened a small bag of dog snacks and the bag split apart - thousands of teeny tiny dog treats all over the floor. Had to call hubby in to pick them up before the dog had snarfed them all. Well, that send me into about an hour's worth of sobbing. Also, an this is new today, I'm starting to get a little pissy. Like irrationally pissy. For now, anyway, I'm blaming the drugs.
I should mention that this week they changed the Oxycontin over to Percocet (I don't know the dosages off hand) and also have me on Valium 10 mg (diazepam). That, the laxative, and the stool softener is all I'm taking.
If any of you have any similar experiences and/or any advice to share, I should would appreciate hearing your stories.
Thanks - love and gentle hugs to all.
Fifa
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Originally posted by fifa View PostHi, Leah -
This made me laugh out loud! I read this several days ago at work, but I didn't have a chance to respond. That. Is. HILARIOUS!
Thanks to you and a couple of others, I asked the physician assistant about getting the pain meds before we leave the hospital, and she assured me that they would take care of that. So, thank you! I'm also going to ask for a shot or something for the ride home. It will be the one time I can relax while someone else is driving. LOL
I hope you and everyone else will share their funny stories with me. The humor really helps!
Take care - hope you are doing great!
Fifa
I just had to post this while I was thinking about it - had you in mind when it happened on several (more like NUMEROUS) occasions. One day, I'll make a list of them and post them here, just for laughs.
Anyway, I wanted you to know that I had my phone with me and texted several people. Took some pictures, too. I was SO out of it (like two oxycontin every four hours whether I needed them or not) that I had no idea what day it was, what time of day it was, etc. Long story short, I texted a LOT of my buddies at apparently all hours of the day and night. They are all quite amused by this, but I was appalled to find out that I had done this. LOL I texted my cousin around 4:00 a.m. one morning asking her if she would mind stopping by to feed the fish. Uh, we don't have any fish. No idea what I was thinking about or what I was actually trying to say. Anyway, they were all actually very happy to hear from me and didn't care what time of the day it way. Again, I'll put a list together soon just for our own amusement. I texted my husband so many things that he couldn't understand...so many misspelled words, incomplete thoughts.
Oh, and the best part? Well, to me, anyway. You'd have to know us to understand out completely warped sense of humor, but my husband had been sneaking around taking pictures of me in the weirdest positions. You don't know how many pics I have now of me playing Battleship on Wii but having fallen asleep with the remote in my hand, still pointed at the television.
Maybe hubs and I are just weird, and maybe it is because I'm starting to feel a little better, but this stuff is making laugh (when there's been little to laugh about lately).
Hope you are doing well - was thinking of you and thought I would say hi. (smiley)
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Fifa....i read the same thing Linda Racine mentioned...
that Nuycenta should not be taken if an ileus is present...
perhaps you should double check it with the doc who
prescribed it....????
as others have written, i am so so sorry you are suffering
so and i hope things calm down and quiet down every way
possible, for your poor body to rest, heal, and get some
nutrition....i am sure not being able to eat food is contributing
to feeling weak....and i think Linda is right to say you were
discharged too soon....
a referral to a pain doctor....by your surgeon or GP...might
help, as Linda also mentioned....
there should be a doctor just concentrating on trying to get
you relatively comfortable, if there is such a thing right now, in
terms of the pain you are dealing with...while having the knowledge
of how meds will impact your gastrointestinal tract.
thoughts and prayers...
and a hug and a woof....
jess...and Sparky
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Hi Fifa!
Just checking in to let you know, I think about you everyday & I'm sending prayers for steady recovery.
Love your sense of humor: bowels & mental state being one in the same! I can certainly identify!
I'm impressed: a whole flight of stairs - good for you!
Take care!
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Originally posted by jackieg412 View PostHi. Fifa, as rough as that all sounds to me it is like the same journey. I remember just being able to eat a single bit of food at a time.like one grape or a single potato. I was thirsty all of the time. And then it was a single sip of something. Sitting was impossible and I paced back and forth a lot. It will improve. A lot of rest yet. Even if you can't sleep for long. The spinning , I would think is coming from the meds. My surgeon just gave me a 2 mg dose of diazepam , I could not keep it down . Medication can help, but it can also be a trial and error type of thing. For me it is mostly error.
It seems in retrospect now that the bed spins were probably most likely related to being dehydrated. I pushed as much fluid as I could, and it took two days, but I'm happy to report that it has gone away (knock wood). The feeling is hard to explain, but it is as if I were tied to a spit that got turned very quickly - that rolling down a hill feeling if you ever did that when you were a kid. It happened so fast that it was instant sick-making... all I could think about was I have to get prone now. I counted up the days, and it was something like 19 days with maybe a bowl of Jello, some ice chips, two frozen sherbet cups, and very little else except sips of water with meds. A lot of what I took in came back up because of the ileus. Anyway, in doing some reading about dehydration, I think this was the problem.
I've started to eat again, but it seems like only very small amounts are working best. I'm trying to eat lots of veggies and fruit so not to tax my gut so much. The very best thing I've found so far is tea with sugar and soy milk (I don't drink regular milk). I think several cups of that turned me around. Oh, and I drank a cup or two of prune juice, and even though I love the stuff, probably won't do any more large quantities of that. The acid of fruit juice has been hard for my bits to handle. LOL
Thanks for writing - I certainly would appreciate any and all advice! Thanks!
Fifa
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Hi Fifa...
Sounds like you're pretty much of a mess at the moment. I'm sorry that it's so difficult. I suspect that you were discharged from the hospital too soon, and now it seems like you're like a pinball. Do you have a primary care doctor, or even better, a pain doctor, who can take over your care?
I think it's a good sign that you're hungry. When you eat, eat slowly over a long period of time. Hopefully, that will cut down at least a little on that bloated feeling. By the way, risotto can be constipating in some people. Try fresh fruit. For some reason, that was pretty much the only thing that appealed to me after my first spine surgeries.
I had never heard of Nucynta, so I looked it up. One of the first things i read was "You should not use Nucynta if you have severe breathing problems, or a bowel obstruction called paralytic ileus."
Hang in there. This will all get worked out. I hope it's sooner rather than later.
Regards,
Linda
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I had severe abdominal pain in hospital and at home until maybe day 3 back home.
My abdominal pain was beyond the bloated pain was a very inflamed 'angry' pain. It felt food poisoning like pain and not just constipation related.
Eventually I came up with a theory (this may have been induced by hallucination from pain meds) that my body was over loaded with mast cells from the opiates... and my bowel was inflamed from all the mast cell/histamine reaction.
I wanted to take something for the itching anyway so I made my boyfriend go out and get me benedryl tablets, took 50mg to bed that night and woke up next morning with significantly less pain. Bowel function returned to near normal next day.
Most likely a coincidence, but over abundance of mast cells can cause problems in our body. So worth trying if your intestinal pain feels inflammatory and/or you have skin itching. I'd try before bed though as it can make you drowsy.
It took me a while for my taste buds to return to normal. For a while, everything tasted salty, even steamed veggies that were not seasoned in any way. Still salt sensitive which I guess is a good thing.
I had lots of soups -- only the liquid the first week back. I tried and wanted to eat solids but my body wanted nothing to do with it. Soup and smoothies kept me going. Also prune juice.
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Originally posted by titaniumed View PostFifa, I see your posts are getting longer, which is a good sign.....
I hope you are eating.....I say this because on meds, eating can seem impossible. The body can barely keep up after major surgeries on a regular diet, this is why I say this....I only felt better after I addressed my nutritional needs.....I remember eating chicken soup. I think we are taught this in Kindergarten. (smiley face)
And I hope you are doing your walks......you know what I’m saying. I would go out and walk about 300 feet to my neighbors home, turn around and come back. I did this around every 2 hours......along with pacing in the house.
We were the same way with meds.....but for now, you have this careful medication balancing act you have to do and I know it sucks, but soon it will be over....
I found Zantac to work best for acid.....the regular strength, not the heavy duty stuff. Dry Granola is also good for this....I kept a box of it by my bed.
Ed
I've been trying to walk, but hadn't been doing as much as I should because I've been kind of weak. Yesterday, during a moment of sheer willpower, I walked downstairs with my two-legged and four-legged boys. Can't tell you how nice that was. Puppo doesn't seem to understand where I've been but won't leave my side since I've been home. So, that's 14 stairs to the lower level and 14 back up to the main. It was plenty. LOL
Hope you're well. Thanks for your encouragement and support. I'll post more as I get stronger.
Fifa
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Hey there FIFA! Glad to see your writing more, that is a good sign. Now on the topic of Nucynta, we have given this particular med to many of our post-op patients and have seen good results. But our patients are not fusion patients. From my understanding from the literature our med reps presented us with is that Nucynta reacts in the body like NSAIDS and aide in the reduction of inflamation while dealing with pain without the addictive nature. We have seen many pain doctors prescribing this med as well and have seen studies where after a certain amount of time it enhance sensitivity to pain (which is weird). It's only been out for post-op pain for about 2 1/2-3 years so there really are not many long term studies on it yet. But if it helps, great!
I understand the waking of the bowels. After my full fusion I did not get clear liquids (other than ice chips) till day 6. I was not on solids returning home and didn't feel like eating till almost a month out. It took a good three weeks before the constipation let up. Heck, this time was a lot less time under Anastasia and my system has finally woke up with the help of mag citrate. So even with less stress it took a week to want food and to wake things up.
It will get easier. I can't fathom being cut loose so fast and then ending up in Boone. Did you have an Ortho while at Boone or GP?
I am praying that things begin to ease up!
(((Hugs)))
Tamena
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