Thanks for your comments and concerns very thoughtful. Here to getting my pain under control very soon.
Take care,
Misty
Thanks for replying to my post. I will keep these things in mind to talk with my pain clinic doctors about. These were very helpful, and supportive thoughts and ideas. I'm so glad that u have your pain under control. Everyone deserves to have that in life. Hopfully I can start enjoying my life more with better pain control also.
Thanks again
Take care
Misty
Hey Misty, not sure this is your biggest concern of the moment but I am sure it will come around again and have a go with you.
I'd keep after the docs to find the right combo of pain medications for you. Sometimes they need rebalancing on a fairly regular basis. For me (at this moment) a combo of gabapentin and baclofen with plaquenil and a daily side or two of 1300mg of acetaminophen are keeping the pain manageable. I would never have thought acetaminophen alone could begin to control my pain. It turns out the narcotics were causing increased sensitivity to pain!! They do that but nobody ever tells us!
You might get better relief with dose increases of one or both of the drugs you currently take. I don't believe you are close to the maximum dose of either gabapentin or Zanaflex.
Or, you might need to change the drug you are using. Zanaflex is short acting. It peaks in 1-2 hours and then only lasts 3-4 hours. It can also be absorbed differently when you take it with food - or on an empty stomach.
Sometimes it takes the addition of quality sleep, an anti-anxiety medication, biofeedback, relaxation, distraction, massage or a host of other possible combos to really work against pain. The best docs will work with you to find the right combinations now --- and again later.
Again, good luck getting the upper hand against pain,
Mary
Pain clinic have many ways to help pain besides just narcotic drugs.
I have constant unrelenting body pain and nerve pain from a long lesion in my C spine and my pain doc has tried lots of drugs and physical interventions to help me. I had injections into my neck, lower back and buttocks and finally had a complete block in the sacrum. Its all helped. I am really sensitive to drugs so most of the trials with them bombed.
Finally though, I had to go on the fentanyl patches and up my gabapentin to control all the pain and keep me sane. Unfortunately, I am between a rock and a hard place with the fentanyl. The 25 mcg patch is now too weak but the 50 mcg one is too strong. So I have to add in a half tab of tramadol everyday to help me through the afternoon.
Our next trial maybe injecting botox into my piraformis muscles to relax them (my sciatic nerves run through the muscle so when it is spastic my lower legs don't work at all) Insurance might not pay for it, so I am waiting for a price. I might help a lot, not sitting on rope (feels like it) or it might make me too unstable to walk, but I will do about anything to be out of pain. We discussed the pain pumps, but my doc looked and me, skinny person with no fat, and asked if I wanted a hockey puck showing under my skin. I am vain enough to have said NO WAY to that. Plus I am not comfortable with wires going into my spine.
I sure hope you find an answer to your pain! It sure can wreck your life.There are a lot of options out there.
Jessica
Thanks meg your reply was so sweet. I was on vicodin for a very long time it has really done a job on my stomach so please be very careful with it.
I have another appt with the pain clinic Feb 1 all I can do is fight to get something that's going to help. It's sad that we have to fight for everything.
I have hope that I will soon be out of pain. Thanks so much for your prayers and support.
Hugs..... U hang in there also we can beat this.
Misty
I am so sorry you are having so much pain, its so hard to have to live with.
I always have some pain but yours and some others sound so much worse that I don't know how you do it.
I have always had headaches but now my body seems to hurt everywhere. I do takes gabapintin, 1200 mgs a day, I think I should up the dose. I never see my MS Dr. so I never get any other meds for it.
I finally told my primary Dr that if he is not will to help me then I want vicodin .and he gave it to me. Its all II have to take for pain except the gabapintin.
I hope they find something to help you. You don't deserve to be in bed so much of the time or in so much pain. Of course, I am not God but I do not think He would think so either.
I hope I can catch your posts so as to keep up with your progress.
Take care of yourself and I will keep you in my prayers...
meg
I have been taking 1200mg a day of gabapentin for 2 1/2 years and same for the zanaflex i take 1/2 tablet by mouth three times a day and 2 at bedtime.
All the doctors that i see which is alot are saying ms but they dont want to diagnose me with it because i dont have lesions on my brian/ spinal cord.
But are saying i have everything else, My old neuro want my to have another Lp done. And, a rehab/ med doctor wants me to have another brian mri done but with constrast.
I have an appointment with The department of Neurology and then an appointment at john hopkins i believe i will have answers very soon.
Thamks so much for your thoughts.
Take care.
Misty
Mobic is a NSAID (non-steroidal anti-inflammatory drug). It's impossible to know what the cream is without a name.
How long have you been on the gabapentin and zanaflex and at what dose? Both often take some time to "kick in". Gabapentin in particular is usually increased at intervals to find the lowest effective dose. Lots of treatments don't work immediately.
Sometimes narcotics help for the short term until other treatments start working. I agree with Sumanadevii that they are seldom the best long term solution.
Since you have been left without a diagnosis what do the docs say is causing your pain and disability? That would be the first step to finding the best treatment.
Good Luck with finding relief.
Mary
I would like to thank everyone for responding to my post and saying very helpful thoughts along with supportive as I can't begin to tell u how much it means to me. I'm trying very hard to stay positive everyday but, sometimes when your in so much pain it can become a hard task. This was at a pain clinic that I decide to go to and see if they can help.
They give me mobic and pain cream? I have never heard of this medications before?
I'm in constant pain everyday even awhile I'm in bed but, when I'm lying down it does give me some relief. I have tried everything to get compfortable. And, nights are my worse time.
Thanks again to everyone. Very thoughtful and I will talk to the pain doctor about these suggestions. To see if they would be good for my case or work for me.
Take care, Here's to helpfully getting out of pain that is all I want. I think I deserve at lease that.
Misty
Since you are a limbolander and it may take years before a dx...We have many on this board that searched ten years or more for an answer...My suggestion is to go to a pain clinic. I think most people automatically think narcotics when the word pain clinic comes up...Believe me today it is their last choice in treating pain.
There are so many other options for them and they are up to date on the latest. My personal experience as been a horrid reaction to the Fentenyl patch. And to be honest, I haven't heard many good outcomes on the pain pumps. I do know, ain't no one putting anything near my spine as I feel like my lower back is a raw open nerve...so out of the question for me.
At any rate, they have so many other things to be of help. It is where I would go. In some ways I am jealous you are able to lay in bed without pain as I can only get about three hours without waking in horrible pain. Once sitting for a hour or more the level goes down and I am able to join the world again.
As far as reactions to my being in a wheelchair, I have a cute sign my friends made for me that I attach to even the scooters in grocery stores..that says "It's MS Girlfriend...Enjoying the ride". It is attached with colorful ribbons so it can't be missed. All know my condition and most are very kind toward me. You may want to consider something like that...
I am sorry for your suffering. I do hope you will give a pain clinic a go. There is no need even for a limbolander to be in such awful pain.
Keep us posted.
Sumana
Misty,
I am so very sorry for your suffering. I take 300mg of Gabapentin 3 times a day, and 2mg of Zanaflex 3 times a day. Those were not touching the pain.
I now wear a Duragesic patch (Fentenyl is the generic name) for the pain. It has revolutionized my ability to function. At the time that I began using it I did not have insurance coverage. So, I was eligible for the Johnson & Johnson Patient Assistance Program that pays for the medication in full. They are the makers of the Duragesic (brand name) patch. I was on the 50mg patch that I changed every 72 hours. It has been wonderful. There is also a generic version, too. If you have insurance I would imagine you could go on it right away. Check with your doctor, and see if he will prescribe it. It is a form of Morphine. You may get great relief as I have.
I hope this information helps. It is terrible to have that much pain. I understand how debilitating it is. Life becomes so grueling. I just bet this will help you as it did me.
Most sincerely,
Beth
I'm so sorry that your feeling this way. I take gabapentin (600 mg) at night with 50 mg Tramadol. It really got my pain under control. You should not have to go day after day in extreme pain. It's no way to live. I know of people with the pain pump and it does well. Morphine I think
I hope you get some help with this. Stay strong and push for better pain management.
Hugs
Kristi