I was on MST (morphine) for a few years and I was up to 150 mgs twice a day.
My doctor referred me to the Pain Clinic and they have decided that long term usage of MST has to go. They prescribed me Oxycontin - 80 mgs twice a day to start for a month. Then they are dropping me down 10mgs every fornight.
I am now down to 60mgs twice a day and I have been feeling awful. Depression kicked in along with the pain.
However, I am also on Pregabalin. Today I doubled the dosage and within a couple of hours I started feeling so much better.
For the last couple of weeks I havn't wanted to speak to anyone. But today I chatted to my sister-in-law, her daughter and my Dutch friend.
I went to bed about 6ish and had a little snooze. Then I felt so refreshed I got up and started pottering around - albeit on my crutches.
I am thinking of having a word with my doctor when I see him in 2 weeks to see if he can prescribe me more Pregabalin.
I was wondering what others take for their pain and how you have got on with them.
good question Leslie
I'm Don and I was diagnost in 2008 with MM and have been on Morphine [statex] ever since,and it's not fun.The highest doseage was 50mg 3 times a day,now that I'M in remission I'm only on 20mg twice a day.I have tried to get on medical pot .
but the systtem seems to want to keep me addicted to some crap or other.They tried (at my request) to get me off MORPH so they gave me something that absolutly sent me somewhere I did not want to go.I was on it for 7 days and in that time my family wanted me to stay away, I got lost at the mall , and when I phoned the doctors office to complain about the meds they sent the cops to my house because I threatend them.WOW did I flush that crap in a hurry.When is our health system recognise other forms other than narcotics.I have never heard of Pregbalin but if its not addictive and works I would certainly would like to know more .I live in EDMONTON,ALBERTA.
Hiya Don ....thanks for the reply.
I have an update on my meds.
The Pain Clinic made a boo boo a couple of weeks ago. They had me down to 60mgs of Oxycontin twice a day. Then the next week when I collected my meds I had 80mgs again LOL
I thought they were feeling sorry for me as I had seen my GP a couple of days before and told him how much pain I was still in. Then the next week I had 50mgs. Oops. I phoned them up and they realised their mistake so put me on 60mgs for the next 2 weeks.
I saw the doctor at the Pain Clinic on Monday and told him how depressed I was and that the pain was still bad and I really didn't like the Oxycontin so he asked if I would like to go back on the MST. Oh yes indeedy says I HA!
So as things stand at the moment I am on 100mgs MST twice a day and they will wean me down off the MST unless something happens with my next blood test results and the dreaded chemo gets mentioned.
He also recommended another anti-depressant and said he would get in touch with my GP and tell him so when I go next time we can talk about the change in anti-depressants.
Because I self medicated with the Pregabalin I ran out before my next script was due. I picked up my new script on Tuesday and am now back on the Pregabalin and my mood has improved 100% and I am moving about as well YAY!!
Don - can you remember the name of the meds that sent you doolally?
This site explains about Pregabalin....
http://www.nlm.nih.gov/medlineplus/druginfo/meds/a605045.html
Dear Leslie,
Where have you been. I have worried about you, did I miss some of your reports. Especially if depressed, get in touch with us so we can cheer you up. We are all MM patients so we have similar problems.
I am back on Chemo but it does not seem to affect me badly. I am also not in pain. Hopefully the doctors can help you get relief and I hope that your walking improves also. Would a recumbent bike ride help you get stronger?
Take care and don't be a stranger.
Liz Schmidt in PA
LeslieK said:
Hiya Don ....thanks for the reply.
I have an update on my meds.
The Pain Clinic made a boo boo a couple of weeks ago. They had me down to 60mgs of Oxycontin twice a day. Then the next week when I collected my meds I had 80mgs again LOL
I thought they were feeling sorry for me as I had seen my GP a couple of days before and told him how much pain I was still in. Then the next week I had 50mgs. Oops. I phoned them up and they realised their mistake so put me on 60mgs for the next 2 weeks.
I saw the doctor at the Pain Clinic on Monday and told him how depressed I was and that the pain was still bad and I really didn't like the Oxycontin so he asked if I would like to go back on the MST. Oh yes indeedy says I HA!
So as things stand at the moment I am on 100mgs MST twice a day and they will wean me down off the MST unless something happens with my next blood test results and the dreaded chemo gets mentioned.
He also recommended another anti-depressant and said he would get in touch with my GP and tell him so when I go next time we can talk about the change in anti-depressants.
Because I self medicated with the Pregabalin I ran out before my next script was due. I picked up my new script on Tuesday and am now back on the Pregabalin and my mood has improved 100% and I am moving about as well YAY!!
Don - can you remember the name of the meds that sent you doolally?
This site explains about Pregabalin....
http://www.nlm.nih.gov/medlineplus/druginfo/meds/a605045.html
Leslie thanx to you for replying. I don't seem to be able to talk to anyone at all. I can't seem to find any one anywhere that has MM let alone understand my condition , but I come from a long line of fighters. My grampa was wounded 3 times in WW 1 and still came back and had a large family .My oldest bro died of liver cancer in 2006 .then lung cancer got my dad in2008 I was diagnosed in 2009 with MM ,then last year my young bro was diagnosed with prostrate cancer ,that's three of four brothers,no girls.Anyway just a bit of my history ,I would like to hear others story .Anyway the drug they gave me that sent me DOOLALLY [new word for Don,help ] it's called NUCYNTA ,it's a narcotic of course and I told them NO MORE NARKS PLEASE .But of course the doctors know more than me ...... I loose. reply any time you want I'm here.DON
LeslieK said:
Hiya Don ....thanks for the reply.
I have an update on my meds.
The Pain Clinic made a boo boo a couple of weeks ago. They had me down to 60mgs of Oxycontin twice a day. Then the next week when I collected my meds I had 80mgs again LOL
I thought they were feeling sorry for me as I had seen my GP a couple of days before and told him how much pain I was still in. Then the next week I had 50mgs. Oops. I phoned them up and they realised their mistake so put me on 60mgs for the next 2 weeks.
I saw the doctor at the Pain Clinic on Monday and told him how depressed I was and that the pain was still bad and I really didn't like the Oxycontin so he asked if I would like to go back on the MST. Oh yes indeedy says I HA!
So as things stand at the moment I am on 100mgs MST twice a day and they will wean me down off the MST unless something happens with my next blood test results and the dreaded chemo gets mentioned.
He also recommended another anti-depressant and said he would get in touch with my GP and tell him so when I go next time we can talk about the change in anti-depressants.
Because I self medicated with the Pregabalin I ran out before my next script was due. I picked up my new script on Tuesday and am now back on the Pregabalin and my mood has improved 100% and I am moving about as well YAY!!
Don - can you remember the name of the meds that sent you doolally?
This site explains about Pregabalin....
http://www.nlm.nih.gov/medlineplus/druginfo/meds/a605045.html
I hope you are getting some answers Don. We started the group for your exact situation - not being able to find anyone with MM.
Don, This is the place to help find answers, most people know so little about MM that they fail to understand the challenges it creates let alone the treatment we must endure. Hear you will find people who care and have been or are in the middle of their treatments. I know this place has been one of my strongholds for over 2 years now, it has helped build me up on the bad days and prepared me for the things to come. So don't be shy, ask about and talk about your concerns, post discussions. Sometimes it can take a while to find the answer you need, but most of all you can talk to a bunch of people who are in the same boat as you. We are just a bunch normal people from all walks of life, spread out of the whole world who need each other and can try to help each other.
Take Care and may God Bless
Rodney
Everyone , I was diagnosed with MM in 2008. In 2009 I had a stem cell transplant.Its been over 4 years now. My problem is neuropathy in my feet and legs which I take Tramadol for. If I can help anyone please let me know. God Bless
ANN J.
very well said Rodney. Hope you are doing well!
Hi Ann,
Have you tried Neurontin, this is a medication for nerve pain and circulation. I have also had some patients that get relief from acupuncture. Just a thought.
I take gabapentin.Is that the same thing ? Thank you . I just saw your email 
Leslie, I take gabapentin and it works great .
hey gang I walked by my self yesterday hurray.
I take 7.5 -325 hydrocodone and 75% fentanyl patches every three day patch. I still get some pain but most of the time I can bear it. I use a cane to walk for balance and weak legs. I know I should exercise my legs more and hope to build them up. my complaint is that I feel crappy a lot of the time. I think that it is all the drugs I take. just had my rvlimid cut to 20mg from 25mg. lowered a little on the chemo. so much tingling in my fingers. hope that I never need more powerful drugs. drugs affect me as I am so sensitive to them.
Carole, sorry you are in so much pain . I was on velcad for chemo and that caused me to be unable to use my legs from May of this year my DR. took me off of all my cancer drugs and I had physical therapy since may of this year, and I finally walked yesterday. God Bless you.
Hi Leslie,
I was diagnosed in 2011 with MM and had 8 mos of chemo followed by a stem cell transplant and post chemo for 2 mos. I was feeling the best I had ever felt last October, but after I completed the 2nd round of chemo I ended up with constant Left hip pain and stiffness in my joints and occasionally my back. I do not take any pain meds. What I asked for was a prescription for physical therapy and pool exercises, and they have helped me so much. I also have reike therapy and massage therapy. I am in pain, but the narcotics did nothing for me so I never took them again since the hospitalization. I am in remission and continue on Revlemid 10mg daily. I have also been diagnosed with fibromyalgia as I have painful areas/sensitive to touch and insomnia. I try to stay busy and as active as possible. I feel for you and so sorry that you are going through such a time. Try alternative measures maybe they will help. Your MM friend, Janet
hi char I have been having muscle pain. don't know why . it gets so bad. I do sleep a lot and of course that helps. I always feel good when I first get up. had treatment yesterday so I have the shakes today. I am on 2 patches now. they are different, one for pain and one for muscles. I will talk to my doc about the meds. he just reduced my revlimid to 20 a day for 14 days and off 7, I am so happy you can walk again. I know what it means to me to beable to get up and walk to bathroom and kitchen in the morning. good luck and keep up the good work.
Char said:
Carole, sorry you are in so much pain . I was on velcad for chemo and that caused me to be unable to use my legs from May of this year my DR. took me off of all my cancer drugs and I had physical therapy since may of this year, and I finally walked yesterday. God Bless you.