Overcoming Daily Pain

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Overcoming Daily Pain

Postby drummergrl » Sun May 20, 2012 5:08 pm

What are some of your best tricks for overcoming that daily pain? It's become fairly constant for me and it's more overwhelming than I realized. It feels like every inch of my body hurts and it's really wearing me down. I'm already on neurontin and I've been taking 600 mg tabs of ibuprofen like candy, I get plenty of sleep, and I try not to get too active on already painful days.

Any tips? My GP has said he would up my neurontin but I'd rather not do that if I don't have to. What gets you guys through the day??
CM, SM, Scoliosis
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Re: Overcoming Daily Pain

Postby gunflint » Mon May 21, 2012 6:24 am

I hate to say it but Hydrocodone is a complete game changer for me.
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Re: Overcoming Daily Pain

Postby drummergrl » Mon May 21, 2012 10:53 am

If you don't mind me asking, what is your dosage? I've been taking it at night occasionally, when I'm absolutely miserable, but I'm fuzzy and foggy the entire next day. Is something I would adapt to if I took it more regularly?

Also, have you tried Duloxetine (which I think is cymbalta)? Before I started Neuronin i was on a trial of Duloxetine. It didn't work then, but I'm wondering if it worth another shot.
CM, SM, Scoliosis
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Re: Overcoming Daily Pain

Postby gunflint » Mon May 21, 2012 4:39 pm

60 mgs a day. It's a lot, but without it I'm pretty much on the couch or using my cane. With it my good days out number my bad. Without it bad days out number the good.
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Re: Overcoming Daily Pain

Postby Dcuster » Sun Jun 03, 2012 10:35 pm

oh my goodness, I take 600 mg of neurotin 3 times a day, plus I take up to 4 vicoden a day, 4 baclofin a day and 2 klonipam a day oh and up to 3 soma's a day. I have been taken this for the past 3 years except they just added the klonipam in the past 3 months. It helps a lot with my leg cramps at night.
SM t10-T12 2.5 x 1.1 cm in dia, thorasic shunt 2002,
Pineal Cyst, C5-C6 fusion 2005, Lumbar L2-L6 w/4 level fusion with hardware 2006, adrenal gland tumor, 7-8 thyroid nodules, 2008 C4-C7 Corepectomy with hardware.
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Re: Overcoming Daily Pain

Postby drummergrl » Mon Jun 04, 2012 10:35 pm

Wow, it is people like you that help me get through my day. You are so strong and the best part about this message board is that I can hear others' stories and gain courage.

My doctor just doubled my dose of Neurontin and I've recently been taking Vicodin at night- the pain seems to get worse the later it gets. Because I seem to have chronic SI joint issues, a long spinal fusion, a residual syrinx, and a recent hip surgery, I can't seem to find out what exactly the pain is from. Hoping to get in soon to see a neuromusculoskeltal specialist and get my life back on a better track.
CM, SM, Scoliosis
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Re: Overcoming Daily Pain

Postby JeffinMI77 » Tue Jun 05, 2012 5:23 pm

Gunflint, what do you take with Hydrocodone in it? I'm prescribed 4 norco 10-325's a day so that's 40mg's a day. My pain Dr said that was max. On bad days I take more. Plus i'm up 20 hrs a day. I also take 300mg or Neurotin 3x a day and Soma PRN.
syrinx x2 T7-T8 to T9, and T11-T12 to T12-L1...also bulging disc at T4-T5, T6-T7, and T8-T9.
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Re: Overcoming Daily Pain

Postby gunflint » Wed Jun 06, 2012 7:55 am

Lortab 10 / 325 10 mg hydrocodone / 325 mg tylenol. I also take 1800 mgs of neurontin a day.
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Re: Overcoming Daily Pain

Postby wendi » Thu Jun 07, 2012 11:56 am

I take 30 mg Oxycodone and 10/325 percocet 4 times a day, 10mg Flexeril at night. .05 mg lorazipam, 100mg Topamax at bedtime, a naseau med on occasion and prevasid each morning, along with my blood pressure med and multi vit and extra vit D. I have a med basket that looks like my parents used too, Geez! I also have heating pads and ice packs and Voltran gel and extra pillows for under my knees. Don't forget my CPAP machine for my sleep apnea. I may have forgot something.
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Re: Overcoming Daily Pain

Postby gunflint » Thu Jun 07, 2012 12:22 pm

I have been holding off on the Oxycodone and Percocet. I'm hoping to delay traveling that path as long as possible. But I'm afraid that one day I'll have to switch over.
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Re: Overcoming Daily Pain

Postby JeffinMI77 » Sun Jun 10, 2012 1:46 pm

Thanks Gunflint. I take Norco 10/325, same thing. She just has me at four times a day but being that i'm up for about 20 hrs a day I take six. I also take 900mg of neurotin. I'm trying to get my pain Dr. to give me enough for the 6 a day so I don't run out. Sleep more than 4 hours at a time is impossible. I wake up feeling like I was hit by a semi!
syrinx x2 T7-T8 to T9, and T11-T12 to T12-L1...also bulging disc at T4-T5, T6-T7, and T8-T9.
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Re: Overcoming Daily Pain

Postby karenb » Wed Jun 27, 2012 11:56 pm

Good evening,

I figured I weigh in on this one, since I've been dealing with it for 5 years now.

Medication:
  • Up to 4 Vicoprofen per day (7.5 mg Hydrocodone with 200 mg ibuprofen) - I'm religious about taking one with breakfast and one at bedtime - that really helps with the woozy feeling (I get it really bad when I just take one occasionally). FYI, I can't take Vicodin, since it contains Tylenol.
  • 1800 mg Gabapentin - split up into 3 doses of 600 mg each
  • 30 mg Baclofen (for spasticity, which causes pain)
  • 60 mg Cymbalta in the AM
  • 2.0 mg Klonopin in the PM (super helpful with spasms & myoclonus)
  • Lidoderm patches - topical anesthetic as needed for specific areas of pain (especially my bursitis)
  • Flector patches - topical analgesic as needed for specific areas of pain
  • Voltaren gel - topical gel that really helps pain in certain spots
  • Custom compounded cream that includes ketamine & ketoprofen, among other things, for sciatic nerve pain

I gave up on the medication basket a long time ago - I have a big box in the kitchen, plus a whole shelf in the closet!

Other things that really help are microwaveable heat pads (e.g. buckwheat bags or rice bags) - the provide gentle comforting relief right where it hurts. I also adore my TENS/Sequential Stimulation machine. I also use extra pillows under my knees, plus orthopedic shoes (to keep the bones in my feet from dislocating).

While I was in the hospital, they had me in some kind of variable compression leg wraps which really eased the pain in my legs... If I ever figure out what they're called, I'll let you know.

Dang! I sound like a total druggie!

Karen
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Re: Overcoming Daily Pain

Postby TabulaRasa » Sat Jun 30, 2012 8:23 pm

This is another thing I worry about: increase of medications. Since January, I've been on Vicodin, muscle relaxers, Gabapentin, and now Tramadol. My dosages have been at the basic level. I'm seeing my neurologist in August for a non-pain killer pharmaceutical treatment for my muscle pain and then I'm supposed to start manual physical therapy.

Has anyone had any luck with physical therapy before?

I had a complete moron for the first round of physical therapy. She worked on me for no more than 20 minutes expecting the stuff to last for days.... And I HATED the TENS unit. It made my shoulders hurt more.
Diagnosed with CM 1mm herniation June 12th, 2012
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Re: Overcoming Daily Pain

Postby gunflint » Sun Jul 01, 2012 7:48 am

Yes and no. Before my diagnosis I went to about 10 weeks of PT for the burning pain in my left arm. We all know why that didn't help. However I have found some relief in back pain from PT. It is extremely important that the therapist is knowledgeable about CM/SM
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Re: Overcoming Daily Pain

Postby TabulaRasa » Sun Jul 01, 2012 8:36 am

Well that makes sense, I wasn't diagnosed with CM the first time around so she was just helping with the bulged discs. Hopefully this next guy knows what he's doing.
Diagnosed with CM 1mm herniation June 12th, 2012
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