Pain Cycles?

Hello,

I just wanted to say I too have really bad leg pain. Its hard to deal with the pain without any meds, but if it get too bad I take tylenel. As for perscription pain meds, will not go near them with a ten foot pole. I have a sister in law and a close friend that have ruined there lives from pain meds.  There is no turning back for them too. Its a very serious problem in America now. So, take it from me. Do what you can to avoid taking on a daily basis.

                       Majolica

 

On 6/29/2009 mmsurvivor wrote:

May I suggest 500 mgs of magnesium twice daily, some liquid minerals and Calcium/Magnesium with vitamin D and a fatty snack at bedtime. Also add the B Vitamins like a B100 with all the B's. Calcim magnesium help relax smooth muscle and while you have nerve pain? the B's will help.  I keep saying it the doctors totally ignor mugus like it is nothing they are wrong, to me at this stage it is mm and should be treated as same. ASk them to suffer you pain. May I also suggest a warm bath with epsom salts when this gets unbearable.  There is an essential oil called Panaway and if you can get hold of it rub it on the affected area it does help the pain diminish and while it does not take it away it lessens it. It is made by a company called YOung living. All the best in your quest. MMS

On 6/29/2009 stevem57 wrote:

Thanks for the replies, I am currently on Percocet, about 4 per day and I just started Neurontin, 300 mg 4 times per day. The Neurontin is helping but the daily pain is still pretty constant. I will mention this to my oncologist next week. The pain was so intense Sunday morning I almost woke up my wife and her take me to the ER, scary.

Amy, please share you findings after you meet with the specialist. I look forward to your findings.

 

 Thanks very much for the suggestions. I take B-12 injections monthly and several good supplements. I will definitely try your ideas.

 

 From Anna,

Hi Majolica, Dad says if you really need the pain med's you won't get additiced.  I don't like to take them because they make it hard for me to go the bathroom.  I do take them though when I'm really hurting from kidney stones.  Dad has MM that's why I post here in case you wondered about the kidney stones on this board.

Your friend,

Anna

On 6/30/2009 Majolica wrote:

Hello,

I just wanted to say I too have really bad leg pain. Its hard to deal with the pain without any meds, but if it get too bad I take tylenel. As for perscription pain meds, will not go near them with a ten foot pole. I have a sister in law and a close friend that have ruined there lives from pain meds.  There is no turning back for them too. Its a very serious problem in America now. So, take it from me. Do what you can to avoid taking on a daily basis.

                       Majolica

 

Thanks Anna, I agree with your Dad. I couldn't function day-to-day without them. I have tried but I didn't get much accomplished.

Hello, 

      Well, after last nights news. We can all axe the Tylenol too . I knew for a while that I was having liver symptoms every time I took Tylenol. Boy, this really sinks for me. My acquired bleeding condition makes it impossible for me to take anything.  The problem is I really do need some relief now and then. But the risk of liver damage is pretty high and they are now changing their usage info. I guess the grim and bare it will have a whole new meaning again. 

          thanks

Hi Anna!  I'm with your dad on this one -- I've now been around for over 6 years with leisions on all my bones, including my skull, and several crush fractures in my spine.  I too have had lots of leg and back pain which I have had treated with radiotherapy -- and this works fantastically well, but can only be done once in a certain spot so you need to be really at the end of your tether before resorting to it because you won't be able to use it in that spot again.  However, once done my pain in those spots has never returned.

But what I was really refering to is that if you are using prescription medications for pain you do NOT become an addict!!  In fact, you don't feel 'high', you just do not have PAIN anymore!!  I know this because over the 6 years that I have lived with MM I have been on increasing amounts of Fentanyl patches, to the point where I reached a place two years ago that actually covers my pain 90% of the time and allows me to live a 'nearly normal' life style!!  Many people do not even realise that I have MM or the level of pain that I would have to endure without the medication!  My feeling is WHY would you suffer the rest of your life away if you can take something that removes the pain and allows you to walk, move, and generally take part in a normal lifestyle -- just so that you can say "I don't take prescription medication" -- what does that prove??  As I said, I have been on the same dose for just over 2 years now, but my doctor has recently given me a new 'break through' medication called Actiq.  These resemble suckers and you just allow the medication to melt into the side of your cheek -- takes abouty 5 minutes -- and the pain relief is almost instant -- FANTASTIC!  The beauty of these two meds is that I do not have any constipation, which I did have when using Ordine 10, and the relief is so quick that I don't have to take it in anticipation -- I can wait until I feel the pain starting to build before using the Actiq.   Honestly, if people know how much medication I have on my body in the form of patches at all times they would certainly assume that I'm an addict but the truth is that the ONLY thing it does for me is to kill the majority of the pain.  I really don't know why there is so much FEAR of using prescription drugs to kill the pain -- like all the other MM treatments its about finding the right one for YOU -- the one that does the job without side effects like constipation or dizzyness or whatever -- and then finding the right amount that works for you -- and again like all the other MM treatments, each persons needs will be different!!  I suppose that we all grew up fearing morphine and the like, so we we tend to avoid rather than use it because we think that we will become addicted. Well, from my experience this is just not the case, and I'm sure that if it was to have happened it would have done so by now.  I'm about QUALITY of life and these medications give me that quality.  Funnily enough, the one day of the month that I know that I will need to take 'break through' medication is the day that I run our local cancer support group!!  I am literally on the go from dawn until early evening without a break, and no matter how much I rest in preparation, I become exhausted facilitating that meeting for all those people and need my 'lolly pops'!! At first I felt guilty taking them, but then I realised that I was able to be far more effective at the meeting and wasn't ending up in agony at the end of the day and I suddenly lost all guilt!!  So, to those of you who are suffering with bone pain take some time to think this issue through completely -- WHY are you refusing a treatment that will take your pain away?? Perhaps you have a valid reason, and if so, I do feel sorry for you -- for knowing how deep bone pain actually is I pity anyone who can not get real relief somehow.  Listen to your doctors and palliatiave nurse who will all tell you the same thing -- you are not an addict if you use these medications for Cancer Pain.  Best wishes to you all --- there should be no reason for you to have to live in pain! Find what works for you and get on with LIFE.  And don't worry, there is always more or another medication that can be given to you at the end of your life to ease extreme pain -- my oncologist assured me that this was the case and I believe him. Cheers, Cath

Well

     I glad to hear the medication works well for your life, but I guess you don't have any close friends with a pain pill addiction. I am sure if you have seen what it has done to their lives you may have a different attitude. As for them , they don't have cancer, but real medical problems.  O, course they did not start out that way, and do you think for one moment that they would think that they would be in this position from medicine that their doctor prescribed.I can completely understand that you need to be pain free and live a productive life and glad you are not suffering in anyway. I was not implying that everyone needs to suck up the pain. I was merely sending a word of caution as a friend would do.  

                           Majolica

 

 

Thanks for the encouragement poppy/cath, my daily pain meds do help me live a normal life. Once I got over the guilt I realized I was getting a lot more done everyday when I wasn't whincing in pain. I have new projects at work, my wife and I run a Medicaid billing business, I teach at church and I'm the church treasurer. I can only keep and enjoy these activities because I m not suffering debilitating pain.

Be well and pain free.

Steve 

Hello Majolica~~ I can understand your concern about people who become addicted to pain medications, but as you say in your message your friends were not taking the medications for Cancer Pain.  I can't speak about people who take these medications for anything except Cancer Pain, and for them, addiction is not a problem.  I don't really understand why this is so, but both the oncologists and the palliative care nurses all say exactly the same thing, basically that if you have Cancer Pain you can take as much pain medication as you need and you will not become an addict.  Certainly this is true in my situation and for several other cancer sufferers that I know.  Another strange thing is that many of the nurses in the hospitals don't understand this either and can under medicate because of their own lack of understanding.  I had to go into hospital to have my kidney's 'blasted' to shatter some kidney stones and during the night I woke in extreme pain.  I rang for the nurse and requested the level of pain meds that my oncologist had written up for me.  The nurse couldn't believe that what she was reading and hearing was correct and called both the pharmacist and the oncologist at 2:00am just to confirm the dose.  She then gave it to me (after I waited more that 45 minutes! in extreme pain) but when she came in 4 hours later to wake me she was truly surprised that I was a) awake, b) coherent c) and no longer in pain. When I asked her why she was so surprised she responded that she had NEVER given a patient that much pain medication and she honestly thought that I might have been overdosed!!!   I felt so sorry for her and later on spoke with my oncologist who happens to be the chief oncologist at our hospital. He said that this was a common problem with many nursing staff for they didn't understand the different way in which cancer patients responded to pain meds.  Since then the local university nursing school has invited me to be a guest speaker to their 3rd year nursing students to tell them about Cancer patients.  Its been a very positive response to a problem situation.

However, I will bear in mind what you have shared about people who are taking pain medications who do not have Cancer. 

My previous response was meant to free CANCER patients from the guilt and fear that they often feel when they are offered pain medications which will give them a positive quality of pain free life.  For many patients, those reservations learned as children with regard to high power pain medications, are so strong that they refuse to take the help that they are being offered and condem themselves to a life of pain. Words like Heroin and Morphine scare a lot of people, but the reality is that they have been used in all sorts of medications for the past century --everything from toothache creme to headache tablets -- all with familiar and trusted names so people didn't question taking them. Its only lately that we are starting to hear of baby boomers who used copious quantities of name brand aspirins during their teenage years who now have real problems with their livers!  No one knew that this would happen, and everyone thought that they were safe.  Personally I do not advocate taking medication for any reason unless there is no other option. 

However, now that I have intense cancer pain and realistically speaking a possible life span of 5-10 years (if I am very lucky), I feel that my odds for contracting something horrible versus being abled to live a quality lifestyle mean that I'll take the drugs and be able to walk, go to the movies, facilitate my local cancer support group and participate in fun and games with my grandchildren rather than be confined to bed all day everyday in painful agony! 

But I do believe that each and every person needs to assess their own situation and do what they feel is best for them, however they need to know that with cancer pain they will not become addicts by using high powered pain medications to give them a high quality life style. I hope that I have explained my position on pain meds in a way that is clear for those reading this.  I'm happy to answer any questions that anyone might have on this topic.  Best wishes, Cath

Hi tevem57  sorry to hear about the pain you have in your leg and hip.  I have a similer pain cause by my back but with MGUS I know the levels of antibody are lower, the number of plasma cells (white blood cells that secrete antibodies) in the bone marrow is lower, could you have an infection, I know with MGUS if it has no symptoms or problems, then  no treatment is indicated.  What dos you doctor say about you MGUS to make sure it not transforming  into multiple myeloma or similar myeloproliferative disorder I know  the lesion in MGUS is in fact very similar to that in multiple myeloma. But as I said I have the sam pain but I have a sliped disk in my back pushing on the nerve all the best Ray