Yea, I'm learning the difference. Thanks for your explanations and input. I'm not feeling so guilty now. With my prescription for pain I just recently received, I am not tempted to go over what is prescribed, even tho' it's really too weak to affect my mobility and pain level. If anything, I'm going to quit taking it since, at this point, the side effects are more bothersome than the benefits.View Thread
Good morning Bet, I slept to 4:30 this morning! I feel like half the day is gone. It's been awhile since I have had the luxury of sleeping past 3:00. I'm truly sorry that you have bizarre sleeping patterns as well. However, I must be honest and share that I'm also glad I'm not the only one.
Yes, I was able to get a few referrals from my NP. She is asking my Medi-cal insurance for pain management, physical therapy, and an orthopedic doctor to get my left knee process going. My concern is that Medi-cal will most likely send me to the same "pain specialist" as they did before my CHF and heart attack. He is a chiropractor and is the person who recommended that I be put on high doses of methadone as well as other meds which I believe led me to my heart failure. My NP is going to specifically request a pain CLINIC, hoping to be sent to a better qualified specialist. This time I am much better informed, having done research as well as gleaning information from you and others on this website. I have another question. My NP agreed to prescribe ibuprofen 800, Flexural, and Norco 5/325, 3x/day for 10 days for my pain. She initially said that she was not going to prescribe any pain meds for me because she is a bit "gun-shy" since my CHF. Because I aggravated something while tipping myself on my inversion table and the fact that I am so much more educated, she had a little more confidence and mercy. However, this dosage is minimal; it's like taking an aspirin. The combination did take the bite out of my pain the first few days but is not helping anymore. Strangely, it seems that my pain level has increased since being on the Norco. Have you ever encountered that yourself or heard of it in other people? I do not like the side effects of opiates, which for me are difficulty urinating and constipation. This just makes matters worse for me since just sitting on the toilet sends electrifyingly painful shots from my back to my hip to my knee. I haven't been able to find anything on-line about Norco causing more pain. What do you think? NO, I do not smoke anymore; praise God. I went through my initial physical withdrawals while in my coma from my CHF. When I awoke, I was asked if I wanted a nicotine patch and I vehemently refused!!! The memory of having respiratory specialists suck my lungs out (I had pneumonia also) is enough to keep me from picking up another cigarette. I still crave, but not enough to start smoking again. Ok then, I guess I'll stop this chapter. I could probably write a book since writing is very therapeutic for me. I hope and pray that you have better days and restful nights until we speak again. Mel View Thread
Hey calleryblossom, I can so hear myself in your voice! When I first posted on this site, I was truly helped by so many others who have been through the pain as well. I too felt as if I was in a hell hole with no way out. Oh yea, single mom too but got rid of my "other child" about 5 years ago. However, I am blessed with an amazing family.
When reading about your edema, alarm bells went off in my head. I was taking a similar Rx "cocktail" ( I call it that) for back pain, knee pain, and fibro. I ended up having congestive heart failure and a heart attack. You describe the pressure so accurately. When in the hospital with my CHF, I lost about 30 pounds of water weight; I had fingers instead of "hot dogs" again! Did your MD prescribe you Lasix and potassium to help with your water retention? Does your doc listen to your chest for pneumonia or congestion? I was a heavy smoker as well so I was really asking for trouble.
Approximately 2 years ago I had my second knee replacement procedure. At that time, I was already on so much pain meds because my tolerance level had reached its peak. They assigned me a pain specialist and put me in Intensive Care to recover because of the amount they had to give me in post-op. I caution you against increasing but your anesthesiologist should know how to manage your pain while in your procedure as well as afterwards.
I also understand and can empathize with your frustration over not being able to keep the house up or feel "productive". It must be especially tough with a toddler and BF who doesn't help out. I think CTBeth had a good suggestion of bringing him with. My adult daughters thought I was a "drug addict" and needed to just quit taking my pain meds. I brought them with to my neurosurgeon appointment so he could explain the severity of my back condition. It is very difficult for people who do not have to tolerate and function with awful chronic pain to understand our own annoyance of being dependent on Rx.
Just a thought...if you don't take care of you; you can't take care of your little one. I wish I lived close so I could offer help with the little one as this is what my job was before my pain level and Rx got to be too much. Contacting social services in your county as Annette030 suggested may be helpful. I have called them before and they were very helpful since I am on SSD/SSI and Medi-cal.
Again, I am so very sorry for your predicament. I hope and pray for solutions to become evident and you get some help and relief.
Hey An_250595, I'm so sorry for your pain. I too, wonder why your family doctor has not referred you to a pain clinic or MD. I have been on and off pain medication for years because of recurrent knee problems and replacements as well as back problems now. I wanted to try and stay off of pain meds recently because I believe the "cocktail" I was taking caused me to have a congestive heart failure and heart attack. Anyway, I barely made it through that but when I regained consciousness after 7 days, I had been taken off of most of my medications.
My first post hospital appointment was what to take for my pain. I was given Neurontin (gabapentin) which helped for a few months but now it isn't doing a thing for me. I'm not medically trained as some on this site are but I do know the Tylenol is really bad for your liver. Even though it is easier on your stomach and intestines, it is very dangerous for your liver.
I suggest you travel through this social pain management site on other peoples' discussions. I have learned so much from fellow sufferers. Yes, it is the abusers that make it more difficult for those who really need pain medication to just be able to move. God bless you as you seek help for your chronic pain.View Thread
Hey Bet, your medical terminology and information is helpful once again; thanks. It's about 3:30 am and I've been up since about 1:30 am. Just another one of those "lovely" side effects of uncontrolled pain, RLS, and lack of physical fatigue. Grrr...Oh well, it gives me lots of time to read, learn, and pray, right?
I'm seeing my NP today to get my referrals started to a pain management MD and orthopedic surgeon. It's my dysfunctional left knee replacement that started all my problems about a year and a half ago. Then my back went out which was followed by my CHF and heart attack. So, I'm back to square on, or maybe two? Anyway, my pain level continues to increase so I can no longer ignore it. Would I approach my neurosurgeon or a pain MD about the spinal cord stimulator?
My weight loss was a bonus. I lost most of it while in a coma from my heart failure; much of it was water. However, I didn't eat for 8 days while I was unconscious. I understand that the medical team did not feed me through a tube, they just added electrolytes to my fluids. I also unconsciously went through my withdrawals from nicotine. Another blessing in the horror of my episode. I was/am so paranoid about eating beyond my 1500 mg of sodium that most foods I enjoyed previously are no longer viable for me. This helps me because the majority of my food choices need to be unprocessed and natural to avoid sodium. I have at least another 50 pounds to get to a healthy BMI. I had so many factors working against me, it's no wonder I had a heart failure and attack!
Hey Onehurtguy, today is one of the absolute worst mornings as far as pain is concerned so reading your post is encouraging. Not being able to sleep because of pain and barely being able to walk puts me in the frame of mind that narcotics and/or surgery is inevitable.
Yes, I have had 3 MRI's over a period of 1 1/2 years, each time my bulging, deterioration, and pinching increased. My neurosurgeon has warned me that if I lose urine, like when I lost my water before giving birth, I needed to get to the hospital STAT. In addition, I have to take stool softeners because any bearing down or even accumulation in my bowels magnifies my pain noticeably. Also, "drop foot" would indicate an urgent situation.
I typically am not a chiropractor advocate myself. However, my brother and sister-in-law highly recommended her and offered to finance my office visits since I am on SSD and Medi-Cal. She did read my MRI report and did not do any adjustments on my lower back, she simply massaged it. Willing to try anything to relieve my pain, trying to avoid surgery and narcotics, I was hopeful. Unfortunately, there was no relief to be had.
I am so very tired of doctors' offices since I have been seen at least twice a month by someone for either pain in my back or knee and my Congestive Heart Failure and heart attack for the last year and a half. Nevertheless, I'm thinking I am going to have to start the process of pain management for my back and reconstruction, for the 4th time, on my knee. I'm supposed to be exercising daily for my heart and weight loss but my pain makes that extremely difficult. Very frustrating. I have lost 50 pounds in the last four months so you would think that that fact alone would improve my level of pain. Not so much. Well, I'm hoping another 50 will help?
Again, thanks for the encouragement and I hope you have an amazing day! MelView Thread
Thanks for that input onehurtguy, it is encouraging to understand that I am not an addict, I was just dependent. Though I didn't ever search for relief in illegal ways, I certainly thought about it. However, I knew that if I ever reached that point, I needed to admit myself into a rehab center. It is so very frustrating when my system adjusts so very quickly to the level/mg prescribed. I am not currently on any narcotic pain meds but am pretty miserable. For awhile, after my CHF and heart attack, I was able to keep my pain to a 6 or so. I have lived with pain so much of my life with all my abdominal and knee surgeries that I am used to living with it.
However, recently, my pain has increased to an 8 because of something I did to try and relieve and heal my back. My neurosurgeon and chiropractor suggested I buy an inversion table and begin, very slowly, to use it to decompress my lumbar and let healing nutrients get into my damaged nerves. Well, I did as prescribed at the percentage of tilt and time but when I turned myself upright, I got a searing pain in my lower back, much worse than before. It turns out that I tore many connective tissues and need to treat myself with alternate heat and cold, ibuprofen and muscle relaxers. It ain't helpin'! So, I have regressed and am having a hard time getting any sleep because of persistent pain. I'm thinking I am going to have to ask for a referral to pain management again.
I think it's probably a good sign that I have no cravings to get back on pain medication except to manage pain and I don't miss it one tiny bit. I really don't want to do that if at all possible. I can accept the pain if I get some relief throughout the day and night. I was at that point until this mishap. I'm hoping my pain will respond soon to my PT at home.
You are right that there are so many people that are in so much more pain than I and have much larger hurdles to cross. I am finding much comfort and encouragement from this social site already. There really is some wonderfully knowledgeable and compassionate people our there. I'm grateful. God bless.View Thread
Annette, thank you for your response. Isn't RLS the most frustrating, annoying, infuriating abomination in the world?!?
Oh, I would take pain any day to that awful feeling. I am so sorry that that the RLS meds have not worked for you. The Sinemet worked for years but now my doc will not prescribe it for me because it is off label and used for Parkinson's. I have tried Requip in the past with no relief. I agreed to try the Mirapex if he would prescribe it at a high dose and three times a day. He agreed. I was pleasantly surprised. Up to this point in my 52 years, Sinemet was the only one that worked. It did elevate my blood pressure and heart rate though. Now with my recent Congestive Heart Failure and heart attack, I have to be careful what I take. Thankfully, the Mirapex is working and doesn't affect my bp and hr. I am also taking gabapentin (Neurontin) for my back pain and RLS so I think that the two together is contributing to my success. This is a good thing since my back and left knee make it impossible for me to stomp around the house in order to make the crazy feeling go away.
I am so very sorry for your unsuccessful attempts at controlling your RLS. What do you do then? Maybe the Gabapentin would work for you? Have you tried it? In its description, RLS is mentioned. I take the maximum dosage allowed. It makes you sleepy at first but that side affect subsides with time. I hope that scientists find out soon exactly what causes it and a way to make it stop.
I am thinking of and you and will add you to my prayer list. Uncontrolled RLS could drive a person insane, seriously! Hang in there Annete and keep seeking a solution. Mine was an all day annoyance, not just at night, so relief was essential to my sanity. I hope yours is not that bad. Take care.View Thread
cweinbl, thank you so very much for the links. I have been looking for some good solid medical research for some time and have not found any that satisfy my quest for knowledge concerning my lower back pain.
Also, describing why I was prescribed so many meds in order to manage my pain was never really explained to me in a satisfactory way, I was just told I "needed to get off this cocktail your taking." However, I am still convinced that my "cocktail" contributed to my CHF and heart attack; though my NP ignored the danger signs of consistent high blood pressure, attributing to the level of pain I was experiencing. For this reason, I am hyper cautious of what meds go in my body.
I now understand the difference between addiction and dependence. I would never hit the streets, looking for a dealer of opiads; although, to be perfectly honest, I did think about it. It is so very frustrating, as you know, to not be able to get beyond the constant pain. It wears a person down and affects every aspect of our lives. I have observed that my NP and I were not successful in reducing my pain to a manageable level so I figure, why deal with the risk and side affects of pain meds if they weren't helping enough anyway. Although, I did have a sleepless night last night because I just couldn't get into a position that relieved the pain.
Your experience with unsuccessful back surgeries is exactly why I do not want a fusion. I have had so little success with all of my knee surgeries and am highly prone to developing scar tissue, more than the average person, so I want to avoid that if at all possible. I am so sorry that it has been a long journey for you. There just has to be another solution outside of surgery and a "cocktail" of drugs. I do employ biofeedback as I was trained in it years ago for migraine headaches. Again, it's very difficult for me to get into a position that doesn't hurt enough for me to concentrate on relaxation techniques.
My biggest frustration is I am bound to what Medi-cal will approve, which isn't much. So until I qualify for Medicare in two years, I am stuck in the situation I am in. I will not stop searching for a solution though and this social website is already a huge help, learning from other peoples' experiences and knowing that there are others out there that hurt as bad and much worse than I do. I can be grateful for so much. Prayer and looking to God for strength is what gets me through each day.
I truly am so sorry for your pain and unsuccessful journey with effective solutions. Again, thank you for those websites; I intent to further explore them.View Thread
Hi CTBeth, thank you for that website, it was interesting to research. That seems it would be effective for me. I am surprised/disappointed that my neurosurgeon didn't mention it. He did speak of some new electrical procedure that deadens the nerves; not a TENS unit, that didn't help one tiny bit. It didn't involve implanting anything though. However, Medi-Cal does not cover it anyway. My educated guess is that Medi-Cal will not cover anything but pain meds, since that is the cheaper option for them.
I am on SSD, thankfully, since I am a single mom with a "dead beat dad". I am so very grateful for my parents who are helping us stay in an apartment so we have a roof over our heads. When I applied, everyone told me to get a lawyer because no one gets approved the first time. Well, the physician's panel must have agreed that my back and knee were bad enough to grant it right away. However, I do not qualify for Medicare until I have been on SSD for two years. I was just qualified this past December so I have a long way to go.
My next plan of attack is to get a referral to pain management. I'm hoping this new carrier will send me to a bonafide MD because last time I went this route, I was sent to a chiropractor who told me my back was too severe for him to be able to help me. Duh! Oh the system is so frustrating at times. I have asked to be sent to an anesthesiologist but Medi-Cal will not cover that. Grrr...
I truly appreciate the advice and suggestion; keep them coming. Thanks Mel 0222View Thread