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Pain Experiences and treatments of pain

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Old 09-26-2004, 04:45 PM   #1
juggler
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Baclofen pump for pain & spasms

I recently passed the twenty year mark as a c-8, t-1 quad. In short, I live with severe spasticity and numerous different pains from severe to moderate in my whole body. My quality of life is nonexistant. I am at a crossroad. I must do something. I do not like the options but cannot continue to live as I have been for many years.

The spastictity has always been a problem. In fact, docs were trying to put a pump in me in 1990 before FDA approval. I currently take 120 mgs. Baclofen, 2 mgs. Klonopin and 4 mgs. Zanaflax. The Zanaflex helps short term. Therest is just a baseline. At any rate with the colder weather approaching, violent spasms have a tendency to wake me out of a sound sleep.
I opted out of the pump on four separate occasions. I have had five major surgeries in my life, each one leaving me worse than the before, including one that made me a quad. I do not trust doctors, period.

It is a problem now because my body is just wracked by pain and I cannot physically tolerate those kinds of spasms.

My pains are the result of a very active lifestyle for twelve years coupled with some SCI related pains. Five years post injury, I developed lower right back pain, right hip pain and what felt like a nail going through the bottom of my foot. Despite going through several pain clinics and being told there was nothing they could do, I discovered in literature that a TENS unit might help. It did and I wear it every night. After 15 years of nightly use, it has created a pain in my Achilles that is as bad as the one being treated. At any rate 12 years ago, I visited a hypnotist who did intensive work with me. I began bodybuilding and swimming daily and was pain free (except the TENS at night) for 3 years. I also experience the burning leg pain but only when cold weather fronts move through (and I live in Phoenix so it is rare). Marijuana helps with that but not the spasticity.

The back pain returned 11 years ago with a vengeance (though I found an excellent D.O. who was able to give me periodic temporary relief with subtle manipulation for nearly seven years until he retired. I have found nobody since. His diagnosis was thoracic, lumbar, sacral and pelvic instability as a result of lack of musculature leading to repeated injury that could only be treated by short term adjustments. His prognosis was a good one. I now see a chiropractor 3-4 times a week for some relief but it has become quite problematic and the chiropractor gets nowhere near the results.

On with the pain. Despite bodybuilding and swimming and taking extra precautions to exercise the small muscles protecting the shoulders (internl and external rotators, etc.), I blew my left shoulder out swimming. This led to to shoulder arthroscopies, neither one of which helped. I was finally diagnosed with a tear of the latissimus and teres major attachment deep in the rear of my armpit for which only a very risky surgery could be done. I said no to the surgery after my a local block done in the doctor's office cause me to lose the use of my arm for 8 hours despite his assurances that is would be fine in a half hour.
Did I mention I don't trust doctors. I have lived with the pain since. It also resulted in my loss of independence ( I rely on caregiver 9 hours daily) and ttok away my active social life and replaced it with a sedentary one in a power wheelchair for the last 8 years. I am grateful I had twelve decent ones as I am aware many of you did not have.

Now over time and without treatment, I have developed pain in the armpit of my right arm exactly like the left arm (too many years of backstroking 1/2 mile daily). My back pain is also bilateral. My right hip and quadriceps are frequently in constant pain and spasm. I have severe pain on the inside of my right knee as well. Neck, elbows, wrists and fingers also come with the territory.

In my search for pain relief, I have tried accupuncture by 5 different accupuncturists, the last one was excellent and I saw her weekly for 6 months but the effects were very short term. I tried prolotherapy (15 set of 20-25 painful injections of sugar water into the ligaments of the back to help form scar tissue and strengthen the back). I went to Tijuana for Pulsed Signal Therapy that could not get FDA approval (and I now know why). I have been through countless other alternative and New Age treatments as well. Desperate people will do desperate things and thee is a whole population of unregulated people out there all too willing to prey on your pain. I quit them all several years ago. Much wasted time and money, but a learning experience. I also use all kinds of Vitamins and supplements that I educated myself on.

For pain I have been prescribed over the course of years: Vicodin, Percocette, Morphine Sulfate, Methadone, Oxycontin, Duragesic patches, and recently Actiq suckers. I have not taken any of these drugs more than few times. I have side effects to opiates that I do not like. First, constipation is obvious the one. I have a great bowel program that allows me to go twice a day with help from a caregiver in two four-hour shifts. I am not sure I could get through a bowel program in the allotted time on these opiates. Secondly, confusion and lack of interest in anything. Third, for me, these drugs have caused insomnia. I don't sleep. I don't care that I am not sleeping but the next day I feel awful.

A doctor told me that I have not given these drugs a chance. That over time, the insomnia may go away as my body adjusts. Duragesic would be theway to go for the least bowel changes since it goes into the bloodstream. So does Actiq and it caused constipation. I am curious as to other's experiences with opiates, bowels, and laxatives though I realize everybody finds their own way.

I worry about addiction and the need for increases in dosage. I have not experienced pain relief from any of the above (but may not have reached a therapeutic dose). However, even Demerol shots in the hospital did nothing but keep me awake all night. Despite the doctor's assurances that I would not get addicted, I wonder if once I start down this opiate road, there is any turning back. But again, I am extremely desperate now.

All this leads to my question. I am ready to go ahead with the Baclofen pump with the understanding that they can put pain medication in it also. Can they set this up to get rid of my lower lumbar pain? Can they get rid of the pain in the ball of my foot (which did respond to a block many years ago that was never followed up on)? Obviously, you may not have the answers but I would appreciate any help. As I said, I have a fear of change especially based on my history and yet must do something and quick.

Thank you for your time.
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Old 09-26-2004, 10:33 PM   #2
dejerine
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Juggler,

There were a couple of terms in your post I didn't understand. One was "quality of life" and the other was "when a cold front moves through Phoenix".

Just kidding. Very sorry to hear of the course of the last twenty years. We all wind up sounding like flakes because we have tried some things that we knew wouldn't work, out of desperation.

I can't add anything about the Baclofen pump (Wise and SCI nurse and a few others answer the technical/medical questions here, I just gripe), but I sincerely wish the best for you.
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Old 09-26-2004, 11:40 PM   #3
CHAD
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I have had a pump for three years and I would shoot anyone who would take it from me. I have a mixture of baclofen,morphine and klonidine. NO SPASMS, NO PAIN AND NO SIDE AFFECTS WHAT SOEVER!!! email me if you have any questions. CHAD
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Old 04-24-2011, 06:06 AM   #4
Gill Hughes
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Quote:
Originally Posted by CHAD View Post
I have had a pump for three years and I would shoot anyone who would take it from me. I have a mixture of baclofen,morphine and klonidine. NO SPASMS, NO PAIN AND NO SIDE AFFECTS WHAT SOEVER!!! email me if you have any questions. CHAD
Hi there. My brother fell 2 months ago and was on a vent. He's now in re-hab with C3, C4 and C5 injuries incomplete. He's often in a lot of pain and has spasms. The doctors have recommended a drug pump and ITB therapy. I've read it might be a bit early for him. What do you think? Also, weren't you scared of the op going wrong? I read you had catheter leak.
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Old 09-28-2004, 03:21 PM   #5
juggler
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Quote:
Originally posted by CHAD:

I have had a pump for three years and I would shoot anyone who would take it from me. I have a mixture of baclofen,morphine and klonidine. NO SPASMS, NO PAIN AND NO SIDE AFFECTS WHAT SOEVER!!! email me if you have any questions. CHAD
Thank you for your response. Did you have the variety and types of pain I had?

Keith
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Old 09-28-2004, 03:49 PM   #6
juggler
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Quote:
Originally posted by dejerine:

Juggler,

There were a couple of terms in your post I didn't understand. One was "quality of life" and the other was "when a cold front moves through Phoenix".

Just kidding. Very sorry to hear of the course of the last twenty years. We all wind up sounding like flakes because we have tried some things that we knew wouldn't work, out of desperation.

I can't add anything about the Baclofen pump (Wise and SCI nurse and a few others answer the technical/medical questions here, I just gripe), but I sincerely wish the best for you.
Thanks for your response. I had a pretty decent quality of life for 12 years despite the pain I had in my back, hip and foot. I lived independently. Had a social life. Had a house built. Was extremely active. Up at 9AM and out of my chair at midnight to sleep.

Then I blew my shoulder out. That changed everything. Pain that took away independence. Inability tp even push my own chair leading to an electric chair. And reliance on caregivers and all the baggage they bring for all my ADL's.
From extremely active social life to sedentary life with "friends" that drifted away or simply disappeared. Huge drop off in quality of life.

Then after 8 more years, I have more pains and less independence. And of course, an insurance company that decided I don't need as much help now. I have very few hours in a day of free time. I am burned out from managing the caregiver revolving door for 8 years. I am just plain exhausted all the time.

I noticed my first 5 years were like any five years. The next 7 were not too bad either. Even the first couple after my injury 12 years post. But it seems like the last two have been like aging 10 years. Just in the last year, the pains added to my life are: increased back pain, slightly dislocated hip with pain and spasm in quadricep, inner right knee pain, chronic groin tear in left leg and increase in overall pain, increasing UTI's and fatigue. I wonder what is next. I am not aging gracefully and my quality of life, relatively speaking (I guess being relative even to me) sucks.

I have been reading this group for a short time and I know you have your own issues and I think what you have going on is in many respects worse than my situation. You seem to hang in there and are quite active on this board with some quality information. Keep up the good work. People do read.
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Old 10-13-2004, 09:06 AM   #7
ouch
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I've had a synchromed pump for 9 years. I just have baclofen in it. It works fairly well, but a person builds up a resistance to the medication. I had a catheter leak for 2 months and felt like hell. After I finally convinced the doctor something was wrong and had it fixed, I felt wonderful. I do not trust doctors 1 bit after many bad experiences, so understand your disdain.

If you are hurting that much, I'd say give the pump a try.

Do you think marijuana use makes things worse? I have a lower back that is becoming very rigid. Baclofen doesn't seem to be helping. Marijuana will immediately loosen the muscles, however. I'm just not sure if doing more harm then good as I'm experiencing stiffer muscles over time. Just coincidence maybe. I'd be interested in your experience. I use it once a week when my body is driving me nuts.

Biometrics... Another method that helped w/ my tone pain was biometrics. Its not widely known about I don't think, and finding a knowledgable, EXPERIENCED practioner wouldn't be easy I'd imagine, but.. it totally takes all my tone and spasms away. It only lasts a short time unfortunately. The pt I go to puts his hand over my body and head and feels energy heat or something. He finds the spot of irritation. I have no clue how, and relieves the tension. His focus is ion the vascular system. The premise being.. the heart is the most important organ in the body. Without the heart we're dead. If other organs or areas in the body feel threatened b/c they sense irregularity with the vascular system, the muscles will tighten as protection. If you clear the vascular system of irregularity, all is well. Its amazing and works awesome. I lay down for 45 minutes. He finds the spots and poof, tone and spasms disappear. All this rambling leads me to a point. Our bodies want to heal themselves. Sometimes drugs just mask problems. I'm for getting in touch with the body first
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Old 10-21-2009, 04:54 PM   #8
James Pharr
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with regard to Baclofen

I have been on many morphine-based and synthetic analgesics, and have given some anti-spasmodics (muscle relaxants). The latest is oral baclofen. I have high hopes for this one. I was wondering if anyone could give me any info especially personal info regarding Baclofen. I have had NO luck with gabapentin, Lyrica, cyclobenzapribe (flexeril, Amrix). My main hope is to avoid all the narcotic/opiates; they have been effective but I want to leave them in the past if I can.

The nature of my pain is perineal/genital spasm and chronic pain and allodynia.

I am new to this site and any ideas would be appreciated. I will try to help others here as well. I am brand-new here, so please forgive if I have not gone by the rules in my approach. Best wishes to everyone else out there suffering like me..
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Old 01-18-2010, 07:32 PM   #9
D'Listd8181
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@James...
Hello. I take Baclofen. I've been taking the drug for about 6 months now. It is a miracle drug for me. My story is way to long for me to explain. I've been having trouble for about 10 years. However, I can tell you this. About 6 months ago, I started getting some odd pain & sensations accompanied by paralysis. I got twitches, spasms, shocks, stabbing pains, painful itches, ticks, tremors, spasiticity, etc. Hot & cold are trouble areas for me like most with nerve issues of any kind. I live in Georgia & it can get pretty hot here. James I got so sick that I was on the floor. I couldn't eat, I could barely sleep, & the heat last summer was making everything worse. I notice that when its hot out or it's hot & humid, that my spine begins to swell & gets inflammation. I have no clue why I have this swelling. MRI's have ruled out disc problems....

I started taking Baclofen upon seeing a neurologist. It has worked wonders. I started a low dose & haven't really had trouble with side effects. I know that my muscles are relaxed. For me, I can move better because I was already so messed up...

I currently take 20mg 3x a day. I started on 10mg at night only. I've had to up the dose in phases because some of the pain keeps coming back. I don't want people to be distressed that the pain returns in me. I was "electrified" throughout my whole body before I was taking my baclofen. Just because I get shocked at times in my chest doesn't mean the medication doesn't work. It does work. I think the medicine takes time to get used to. Many people say they got sick as hell on baclofen. I question if their doctors started them on a low dose at night. My neuro has a 90% success rate with his patients getting little or no side effects. Also, from what I understand some people become immune to it. I find that I eventually do get immune to it to a degree, but I just end up increasing the dose. I lived a very painful life so if I have to increase the dose to feel better I will...If your still confused I recommend reading about baclofen & the chemicals in it. If you still have any questions I will be more than happy to answer them...If I could rate the quality of my life now I would say it is much better than it used to be...

Here is some info on baclofen everyone:

http://en.wikipedia.org/wiki/Baclofen
http://en.wikipedia.org/wiki/GABA_receptor (this is the receptor)
http://en.wikipedia.org/wiki/Gamma-Aminobutyric_acid
You can also google GABA supplement. Some people prefer to take the supplement instead. Apparently it helps people with conditions ranging from pain to mental disorders. I was impressed that some people's lives were a disaster & got better...

Baclofen is a classic medication for spasticity management. It exerts its clinical effects by interacting with neurons that use gamma aminobutyric acid (GABA) as a neurotransmitter. It acts both pre- and postsynaptically to inhibit spinal reflexes. Baclofen is rapidly and completely absorbed following enteral administration. It has a mean half-life of 3.5 hours. Baclofen is metabolized by the liver and eliminated by renal excretion. Because baclofen readily crosses the blood-brain barrier, sedation, fatigue, dizziness, lowering of the seizure threshold, and cognitive dysfunction are common adverse effects. The typical starting dose is 5-10 mg two or three times per day, and the dosage can be increased by 5-10 mg per week. Although 80 mg per day is a commonly accepted maximum, dosing up to 200 mg per day has been used safely and effectively. A baclofen withdrawal syndrome can occur with rapid cessation of usage. Withdrawal symptoms include a rebound increase in spasticity, fever, altered mental status, seizures, malignant hyperthermia, and, very rarely, death. Baclofen withdrawal is typically treated by gradual reinstitution of oral baclofen. In the case of serious withdrawal, intravenous benzodiazepines can be used. Baclofen overdose syndrome can also occur. It is characterized by sedation, depressed arousal, and respiratory suppression and is treated by temporarily stopping or tapering off baclofen. Intravenous physostigmine, flumazenil, or both may be used in severe cases. Repeated dosing may be needed, because these agents have a shorter half-life than baclofen...

Hope this helps
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Old 01-19-2010, 12:05 AM   #10
kel13
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i was on EVERY spasm med until i found zanaflex the capsules which work 3 x better than the tablets. i now take 36mg a day, they come in 6mg blue capsules so i take 12mg 3 x a day. they are even covered by medi-medi insurance tho i had to fight for it since they is no generic. i only pay $3.20 per script and they cost over $1500/month. anyway i'd try it if i were you cuz i said oh hell no to a baclofen pump..i did not want a hockey puck in my stomach not to mention surgery complications and I always have a UTI so i was not a candidate anyway.
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