Where does the pain come from?

[socrmom]

Have a baclofen pump, take 3 different pain meds, and still the pain continues.

I would describe it as strong, vibrating, throbing pain where my pump is (on my left side) and going to my right butt cheek. The only thing that relieve it is double up on Tegratol but then I can't think straight.

Thought I was on enough meds to control the pain but more pops up.

Can anyone relate?

[Kalliope]

I had a pain/spasticity pump put in but had to have it removed because of complications. Even with the medication in the pump, I still had to use patches and by mouth meds.

The way you described the pain where your pump is-is very similar to how I felt. Mine was installed on the left side toward my back. I had a pulling sensation with every move I made. I couldn't sit back or lay on my back or left side because it made the feeling worse.

I had to have 2 different pain meds drained from it because of reactions and the fact that they just didn't help. By the time I said "enough!" I was taking just as much medicine as I was before I had the pump. I had complications that went beyond the pump placement. For me it was like trading one hell for another.

I know it helps a lot of people, and for them I am so happy they found relief. It just didn't happen for me. One thing I will now do and encourage others to do is always check to see if your future implant is on the fda recall list. Mine was, but was installed anyway.

I had high hopes for it because I know people who have it and it changed their lives. Problem is what works for one doesn't for all, so I continue to try and find ways to control my relentless pain.

[1doodles10]

justme

Really need help with any ideas controlling pain,it is now in my face,shoulders etc. have to be really careful as my bowels went into spasms thought it was over spent 20days in hosp..I also have had pneumonia many times as I have it in my throat which causes fluid to go wrong place...I can handle alot but the pain is causing almost more than a person can handle.thanks for any ideas.afraid of pumps had feeding tube which caused mrsa::

[lori]

Yes, I can relate. I spent an hour last night with the burning, electric pain in my right thigh. Seems like most nights after my husband gets me in bed that I have some of this pain, either almost none or almost unbearable. WHY? Is it changing position from sitting?

Things that cause the stabbing pain:
!. Pressure on the back of thigh
2. Twisting to reach.
3. Legs not positioned right in bed.
4. Using my arms above my waist
5. No reason

My neuro said it is from the spinal cord damage. Tegretal helps, but I'm fairly sure it weakens my hands.

So, i feel your pain. My husband and I went out Sat to hear a band. For some reason my pain was esp bad that day...took my usual tegretal, a 500mg vicodin before we left, then another about an hour later with wine. It finally stopped.

I wish you the best,
lori

[kebsa]

the fact that it improves with the higher dose of tegretol does suggest maybe nerve pain- i know that tegretol can make you feel quite zoned out but there are other drugs like gabapentin and pregabalin that are similar but newer and often used as they can be more effective or at least as effective with fewer side effects- but every one reacts differently, personally tegretol works better for me

i have a pump too but mine was orginially placed for pain management prior to the MS, originally they used just morphine and although that worked it required a large dose, now they have added Clonidine, a drug originally used for high BP but also found to help nerve pain and it has meant that i now have a tiny dose of morphine and mainly the clonidine- i do have spasm pain that is getting more severe and getting to the maximum doses of oral meds and they have mentioned the fact that the pump is there as an aside so i am not sure if they can mix the pain meds and antispasmodics if needed

is a pain management person involved in your care or is it the neurologsist - i would strongly advise the input of a pain specialist, pain itself is far more than a mere symptom of MS or anything else - it is a complex issue that most healthprofessionals have little detailed training in. As i said i had a chronic pain issue prior to MS and while the 2 overlap, my neuro is the first to admit that there needs to be guidance from the pain doc (they are usuaully specialist anesthioligists

[socrmom]

Thanks everyone. Now I'm not the only one feeling this pain. My MRI was Mar 1 and the pain is still strong as ever. The way I can describe it is sombody is using a tazzer gun where my pump is and then pain going down my tailbone.

I have doubled the tegratol in am and pm along with my other pain meds. I did make an appointment with pain management doctor.

[rdmc]

Thanks everyone. Now I'm not the only one feeling this pain. My MRI was Mar 1 and the pain is still strong as ever. The way I can describe it is sombody is using a tazzer gun where my pump is and then pain going down my tailbone.

I have doubled the tegratol in am and pm along with my other pain meds. I did make an appointment with pain management doctor.

Okay, this may be way off base, but might be worth a try. I also have a baclofen pump. Sometimes, for whatever reason, I start to have pain near and around my pump and it extends to my lower back/butt, etc. Pain meds don't seem to help too much, I'm allergic to Tegretol and Neurontin, so haven't tried that.

But what does help is a binder. I have an abdominal binder (they originally gave me one after the pump surgery, and I've purchased others since...they're not expensive you can order them off amazon, or get one at your local drugstore.) I put the binder on, and make it pretty tight, if the pain is bad I wear it 24/7 and the pain starts to ease. Eventually when it slacks off, I can take the binder off and go for days without it, but I know one women with a pump who wears hers everyday (during waking hours.) She takes it off, she starts to get pain at the pump site again.

Here's my theory...the pump is supposed to be stabilized but I think they can shift, or do shift...and a little shift can put strain on muscles and nerves, thus causing the nerve and muscle pain. The binder helps to keep it from moving around, and takes pressure off the abdominal muscles/nerves...and thus relief.

Now I'm no doctor, and that theory is completely that, a theory...but when pain starts to happen around my pump, it works for me.

Hope you find some relief.

[foggyrose]

Good old nerve pain....NOT! That has been one of my worst problems/symptoms since this MS journey started 36 years ago. Tegretol (carbamazapine) helped, but made me feel so much like a zombie, I opted for the pain. Now it's just two Aleve a day to take the edge off.

I'm supposed to take part in a clinical trial for a new MS med that's originally for the "bulbar effect (?)" but has been found to help with MS pain also. I don't know the name, when it will take place, etc., but will keep you up-to-date when it happens. I too get the pain in my right buttocks. Think it's the sciatic nerve as it really hurts!

Here's to less pain for us all..........

[lori]

Froggyrose,
My pain is in the back of the rt thigh where the sciatic nerve would be. Has anyone ever suggested the epidural type pain intervention that is done for sciatica due to bulging discs or other back problems?

There seem to be all sorts of treatments for sciatica when it's back related. Has your neuro ever explained why injections wouldn't work?

thanks,
lori

[socrmom]

Here is what happen since my post. The Tegratol has doubled and I use the Lidederm patch at night. I do sleep The pain starts again at 8am. Thats when I take my morning meds. Around 2pm I need 800mg of ibuprofen, takes the edge off.

I am going to pain mgmt and pump specialist later this month. Hopefully to get some answers.

[jnet1589]

Could you please post again after pain management. I've been thinking about going.

[amandarianne28]

Pain used to be my life

I was miserable for 3 years. I burned, tingled, spasmed, felt like I was being stabbed relentlessly. I maxed out on Neurontin, the Tegratol did nothing to touch it or even really take the edge off and I was not sleeping. I was a walking aching zombie.

I finally went to the ER in tears when I couldnt an appointment with my Dr. I saw an ER doc who asked what he could do to help me that day and I broke down sobbing. I told him how I felt like my life was over. I couldnt do anything and was always in so much pain my quality of life was zilch. I told him of all the drugs we had tried and finally I said "I dont care if you tell me to take metamucil and stand on my head as long as it helps. I just need relief and Im begging you for help." He said to hold on and he left the room and about 10 minutes later he brought me 2 prescriptions for Morphine, one extended release and one instant both 15mg. He told me alot of problems with narcotics like vicodan or percocet are they wear off within a few hours of being taken and its usually an hour of pain or more before the next pill can be taken. He said the ER pills would help build a longer shelf life of activity in my system and the IR's would help in the middle when the other was wearing off.

I was given a month of the ER's twice a day and 90 IR's. He also sent a letter to my regular Dr and told her what he did and why. He told me that he went through the ER Supervisor and got the amount approved because they both felt the problem needed to be addressed and if I didnt see my Dr for awhile this way I would have pain relief strong enough to cut through the worst of it. I went home, took a 12 hour ER and an Instant and for the first time in years I did not hurt. It worked. My Dr called the next day and asked if it was helping, I said yes and she said OK, stay on it and she will get a pain contract ready for me to sign at the end of the month when I need refills.

Its been 5 years and I am still on the same dose. I do take less Instant Releases, down to 14-30 but I am also on Tysabri and my MS has become stable finally. Whatever pain medication you take remember they are only active about half the time in between doses. Alternating narcotic/nerve medication and Ibuprofin will help some more but it is really about finding your type of pain and I personally think with myself as my tolerance for pain is very high it takes a stronger medicine to really even touch my pain, which is from nerve damage. Talk to a pain specialist, and decide together what will be best but be ready to test medicines that may not work. At my hospital if you ask right out for pain relief you are deemed a drug seeker 9 times out of 10 so its a process to prove you need the help.

Good luck all, our pain deserves to be treated

[socrmom]

Could you please post again after pain management. I've been thinking about going.

Went to pain mgmt at Johns Hopkins. After exam he attributes the pain to 2 joints. He said the scoleosis is a factor for the joint pain.

He would normally due injections, but because of osteoperosis he wouldn't. He prescribed Mobic (like ibuprofen but stronger and to last 12hrs). It lasted 4 hrs for me. The pain is so bad I feel like passing out. I slept in my wheelchair for 2 nights.

Called my Neuro and asked if I could increase tegratol he said add 200mg in the middle of the day. That was the answer. I am going to try 100mg to see if that would be enough to get through the day.

[lori]

Socrmom,
I feel so bad for you. I thought the whole point of pain management was to treat pain like a disease of its own. I think that guy you saw stinks. For a bigshot working at Johns Hopkins you would hope he would have a more innovative therapy than prednisone injections or Mobic. Thanks for nothing. (it's be nice if your neuro would call and tell him how much he didn't help)

At my last neuro visit he told me he'd rx anything it would take.....oxycontin etc. We both agreed that being "addicted" to pain killers is no longer relevant. I've been taking a 750mg vicoden every midday along with my nightime tegretal and I haven't had that searing pain after getting into bed for a couple weeks. I agree with Amanda's Dr that keeping the morphine level steady may be the difference.

That said, it's good that more tegretal helped. The thought of you sleeping in your wc made me sad and MAD. I wish you could've called Mr Pain management @ 3am to come over and see how his appt helped you.

Sorry for the rant You'll be in my thoughts.
lori

[bobus498]

Tired of being treated like a junkie

Stopped taking the narcotics 2 yrs ago because of the ignorance of others. It's bad enough that the general public thinks anybody who takes narcotic pain meds is a junkie, but it is maddening to realize that, under pressure from the DEA, the medical profession DOES THE SAME THING. Narcotic contracts, urine and blood drug tests, etc. I didn't know doctors swore an oath to bend over for the DEA.

Luckily, I live in a state which approves the use of medical marijuana. It doesn't work as well for spasticity pain as the narcotics but it does an acceptable job and I don't have to put up with the attitudes.