[Acarson]

What kind of drugs are useful for pain management? I am a quad with some shoulder movement, I get unbearable pain in my shoulders and where I broke my neck. I eat ibuprofen and Tylenol like candy. Also, my shoulders and elbows are beginning to get extremely tight. To make matters worse, I have no feeling below my shoulders, but my feet and hands burn. I have been injured for about one and one half years.

[Avocado Baby]

Hi there,

Sorry to hear you're in so much pain. I get than horrible burning sensation too so I really feel for you. Have you tried Tramadol? It's pretty good stuff!

Good luck!

[AZ_PTA]

I sorry to say I don't know anything about the burning sensation, what its from or if there is anyway to get rid of it. But what concerns me most is the fact that you say you eat ibuprofen and Tylenol like candy. You need to talk to a doc, probably you primary care physican and get different pain meds on board. Ibuprofen taken long term will cause ulcers and Tylenol will shut down your liver. If the pain in your sholders is from inflamation, talk to your doc about Celebrex or something simular. It is an anit-inflamatory like Ibuprofen, with out the long term effects to your stomach. As far as the tylenol, there are other non-narcotic pain meds out there that you can take that don't have long term health effects. I just have the tylenol in my head because I just had a patient at my facilty who was waiting for a liver transplant because her's was failing because of taking too much tylenol for arthritis. Anyways, one of the meds I can think of is ultram, i think that is the name. One thing I can think of, if you are c3-c4 quad do you have a ventilator? or are you able to breathe on your own? As for the shoulder and elbow tightness, you should have someone helping you do passive range of motion on those joints along with your lowers. If you have someone doing ROM on your lowers but they do not know how to do it on your uppers, get a script from your Doc for PT (physical therapy) and take that same person to get taught how to range your uppers. That probably would help with the pain too. Hopefully this helps and doesn't hinder!! Amanda

[Texaswheelz]

If your not against it I'd try some marijuana. Does wonders for alot of people in pain that don't like taking other meds.

[percepied]

I've been working with a pain management clinic for close to a year and they've tried many a pharmaceutical. The pain management drugs really come down to about 4 categories -- anti-inflammatories, anti-depressants, anti-convulsants and opioids.

You're trying the anti-inflammatories but at an ineffectual dosage. Of course the high dosages will have all the nasty side effects AZ_PTA speaks of. Duloxetine (Cymbalta) is a SNRI anti-depressant that has shown some success with neuropathic pain (NP). Gabapentin is an anti-convulsant and is sort of the gold standard for treating NP. Unfortunately the body builds up a tolerance rather quickly. Pregabalin (Lyrica) is an anti-convulsant which has received approval from the FDA for treating NP. Clonazepam is an anti-convulsant that has worked some for me -- but beware it's sedative effects. I don't handle the constipation and addictive effects of opioids very well, so I've avoided them. Tramadol is pretty lightweight but might not have quite the serious side effects. I would use methadone only as a last resort.

These are the drugs I've tried at varying dosages. I've met with some success particularly if I take the Clonazepam at small dosages (.25 mg) throughout the day. The others seem to take the edge off the allodynia (burning/tingling NP). Still I have my bad days where nothing works.

Leo

P.S. I've also tried TENS, acupuncture, massage and marijuana. Unfortunately I've met with little success.

[The Ninth Para]

Acarson, on Jan 11 2007, 11:09 PM, said:

What kind of drugs are useful for pain management? I am a quad with some shoulder movement, I get unbearable pain in my shoulders and where I broke my neck. I eat ibuprofen and Tylenol like candy. Also, my shoulders and elbows are beginning to get extremely tight. To make matters worse, I have no feeling below my shoulders, but my feet and hands burn. I have been injured for about one and one half years.

Hello Acarson! And hello to everyone else, I am a new joinee to this forum and this is my first ever post.

I am ever so sorry to hear about your pain, it can quite debilitating I know. Not pleasant at all to live with long term.

I have been paralysed for 18 years and suffer from excruciating and chronic burning pains in both my legs and feet and around my waist. In the UK we are fortunate to have some very good pain clinics under the National Health Service who are very clued up where neuropathy in SCI patients is concerned. This is primarily due to 3 different clinical trials that were carried out in the UK in the late 1970's, 1994, and 2004. The results were varied and unusual.

Clinical trials for pain end up by placing a 'NNT' value next to the agent that is being tested. An NNT (Number Needed to Treat) value of 1 is deemed to be a perfect result, and a NNT above 7 is deemed normal for placebo. I won't bore you with the equations used to work out this value, but sufficed to say any value below 4.5 is deemed a useful result and would represent a high reduction in pain to a sizeable percentage of those tested.

NNT's of '1' are unheard of in neuropathy, sadly, as this would mean 100% of those tested with an agent saw at least 50% pain reduction.

Leo was correct about the families of drugs used to treat neuropathy, but there is an important other family used frequently - anti-epiletics. These are very very useful in treating pain in SCI. From the 1970's Carbamazepine & Amitriptyline (TCAs) were used but had many side effects. In 1994 a large international study showed that GABA inhibitors like Gabapentin (Neurontin) was much more useful and successful in the treatment of neuropathic pain than the TCAs.

No-one knows exactly how the GABA inhibitors reduce pain, but it is thought that perception of pain is altered by scrambling signals.

Since then Pregabalin (Lyrica) has become the first choice of SCI clinics and pain clinics in the UK. It is reckoned to be around 100 times more effective or potent than Gabapentin, HOWEVER some people may respond better to Gabapentin than Pregabalin.

Since I was paralyzed I have been prescribed absolutely every drug on the planet by my doctor in the pursuit of pain relief. Well, not quite every drug, but you get the idea!

My pain was so bad in the early 1990's that I contemplated suicide. I couldn't sleep without Valium, and when awake I couldn't work. Then my surgeon recommended Gabapentin (Neurontin) - and my pain suddenly became more manageable. The pins and needles and burning sensations reduced quite significantly. Then in 2005 he asked me to try Pregabalin (Lyrica), and after 1 month I was a new man, born again, and for the first time in 18 years - I could smile!

He also placed me on a low dose of Pethidine to help reduce the muscle spasms and desensitize my skin, and this, alongside the Lyrica has reduced my pain sensations by 60%, relaxed me (and my muscles) by 75%, and allowed me to live a normal life again by 100%.

So, Acarson, and any other people who suffer with neuropathic pain, I would urge you to have a talk with your doctor about Neurontin or Lyrica.

And stop chewing Ibuprofen or other OTC drugs, they are next to useless where NP pain is concerned.

Anywho, must go I have work to do! I just wanted to say hi to everyone, and congrats on an excellent site, why didnt I find it before???? lol.

Russ

[MDK]

Acarson, on Jan 12 2007, 06:09 AM, said:

What kind of drugs are useful for pain management? I am a quad with some shoulder movement, I get unbearable pain in my shoulders and where I broke my neck. I eat ibuprofen and Tylenol like candy. Also, my shoulders and elbows are beginning to get extremely tight. To make matters worse, I have no feeling below my shoulders, but my feet and hands burn. I have been injured for about one and one half years.

Have you tried massages ?
Kevin had a ' frozen shoulder" pain++ massage helped tremendously.

Russ
Please bear in mind that Gabapentine is quite new all side effects not known yet...

This post has been edited by MDK: 21 June 2007 - 05:08 AM

[The Ninth Para]

MDK, on Jun 21 2007, 06:06 AM, said:

Acarson, on Jan 12 2007, 06:09 AM, said:

What kind of drugs are useful for pain management? I am a quad with some shoulder movement, I get unbearable pain in my shoulders and where I broke my neck. I eat ibuprofen and Tylenol like candy. Also, my shoulders and elbows are beginning to get extremely tight. To make matters worse, I have no feeling below my shoulders, but my feet and hands burn. I have been injured for about one and one half years.

Have you tried massages ?
Kevin had a ' frozen shoulder" pain++ massage helped tremendously.

Russ
Please bear in mind that Gabapentine is quite new all side effects not known yet...

Yes MDK, Gabapentin is new'ish on the drug market (around 1990) and so is Pregabalin (a few years later) but they have had ast least 10 years worth of feedback and are both deemed quite safe. Pregablin has less side-effects and the ones they did find are not so bad (drowsiness etc).

Most pain doctors will prescribe both of these without too many concerns, but yes, it is different for every patient and care always needs to be taken when using a new drug.

I still think the benefits out-weigh the possible risk of side-effects as pain is the worst side-effect of all.

Russ

[Andrew Meddings]

i took drugs for burning pain straight after injury & found myself spaced out & still in pain. i found i coud fight pain in my head & eventiully treat pain as a intruder & tell it to go away. its still there but dosnt affect me . the way i see pain its like a warning light it lets you know there's something wrong. with sci it sends phantom signals. ignore them or keep active & i found i can control pain

[wheeliebear75]

Well there are lots of things that one can do to minimize pain. Taking an excessive amount of Tylenol or Ibuprofen are VERY bad for you. Ask your Dr. about pain management. Be aware that many drugs used to treat pain can be addictive. Also find out about other methods such as acupuncture or pressure, T.E.N.S, PT working on muscles, etc. I personally use a narcotic for pain, a muscle relaxer for spasms, and anti-nauseates (pain tends to make me pukey ), a TENS unit for the neuropathy, and when my legs are burning so bad I almost (sorry if this one offends any completes) wish I couldn't feel my legs.....then I do use marijuana. There are lots of alternatives......all of them have their bonuses and drawbacks, and none of them should be used without finding out their risks and ALL options.

[john S.]

[size=12][font=Courier New]
It isn't important that anyone read this, I just needed to write it.
For most of my years as a C-5 I had no pain. Mybe because I had a TBI at the same time. In the late 90's I started feeling intense pain as though I was being compressed. Not just my spine but knees, hips, shoulders, and lord my back! I did tylenol and other stuff that didn't do anything while I worked. the place went out of business in 2000 and I don't work anymore.
I call it my cape of pain. It has gotten much worse but it does stop for a few hours now and then. Lately pains shoot up from my neck and shoulders. When it is really bad my blood pressure is usually going through the roof, too.
I take atenalol to keep it under control but lately it hasn't affected the high BP. I don't remember the name of the anti convulsive I was taking but it did nothing. I have moments when I can think of other things and not notice some of the pain. I don't have pins and needles. I don't feel burning. I feel as if I'm being crushed with stabbing pains at my hips and knees that have recently begun shooting up through my skull.
i haven't slept more than 2 hours at a time in over a year. Opiates are the only thing that touches it but that isn't always true. I understand the suicidal feelings. I never thought this much pain was possible. I want to scream a bunch of profanities but I'm sure many of you do too.
I never expected a prize for living a long time as a quad, but I never dreamed it would or could be this bad. I was warned opiods are addictive. I don't think they are addictive if they don't do anything
I guess I'm just screaming OUCH!

[nomis]

Crikey John S, I wish something could be done. You’re dealing with a really tough hand.

The thought that flashed through my mind when I read [“…I want to scream a bunch of profanities but I'm sure many of you do too.”] was why not do that. If you feel like doing it and you haven’t really let rip and you’ve nothing to lose, why not? I’ll understand if I hear you from this side of the world.

[john S.]

nomis, on Sep 22 2007, 09:08 PM, said:

Crikey John S, I wish something could be done. You’re dealing with a really tough hand.

The thought that flashed through my mind when I read [“…I want to scream a bunch of profanities but I'm sure many of you do too.”] was why not do that. If you feel like doing it and you haven’t really let rip and you’ve nothing to lose, why not? I’ll understand if I hear you from this side of the world.

Thank you, I do, in fact, curse. Krakatoa had nothing on me.

[smokymtn memories]

So sorry to hear you're in so much pain. Sometimes the venting helps, if not the pain, at least the emotions.

I get the burning from the waist down, but my hands get the pulsing, nasty, stabbing pains.

I hope you don't give up trying, with your doctor, to find something that will give at least some relief. Good luck.

[LuckyinKentucky]

My nerve pain is different than yours but if you are not getting sleep that can only make things worse. In the beginning I was unable to sleep because of my pain. My pain comes in spells so the problem was that if i took an ambien or something like it I could get to sleep but in an hour or two i would be awoken by pain and unable to go back to sleep. I was prescribed Remeron (mirtazapine) to be taken before bed. THey started me off on 45mg but i had them reduce the dose to 30mg as to make me less groggy in the morning... and you will be groggy for the first half hour of being awake regardless of how long you sleep them things off! And regerdless of pain you should be sedated for at least 8 hrs, whereas most sleeping pills put you down and your body naturally keeps you asleep these put you down and keep you down.


Oh yea thought i'd add, after a few months i became able to sleep through it without the pills... for the most part.

This post has been edited by LuckyinKentucky: 27 September 2007 - 01:12 AM

[john S.]

Acarson, on Jan 11 2007, 05:09 PM, said:

What kind of drugs are useful for pain management? I am a quad with some shoulder movement, I get unbearable pain in my shoulders and where I broke my neck. I eat ibuprofen and Tylenol like candy. Also, my shoulders and elbows are beginning to get extremely tight. To make matters worse, I have no feeling below my shoulders, but my feet and hands burn. I have been injured for about one and one half years.

STOP EATING TYLENOL! Anything you try, do not over dose on it. You need to tell your doctor exactly what you wrote there. Theres a lot of drugs they can work with. Remember, what works for you may not work for some other people and vice versa.
If you ruin your liver with tylenol you will create problems you really wanted to avoid and pain feels ok if the alternative is death.

Best wishes and good luck with doctor,
john