Sometimes I think I’m getting Altzeimers when my pain gets so bad. I need more appropriate pain smanagement, but the docs keep passing the buck. How should I advocate for myself?
I'm sorry to hear of your pain and hope your docs can make changes so your pain management improves. If you haven't seen a pain management specialist you might discuss this option with your doctor. Pain management teams may suggest different doses or combinations of pain meds for your situation. Also if your pain is worsening discuss with your neurologist who may need to re-evaluate your treatment. Will be thinking of you as you advocate for improving your pain treatment.
I agree with "moonflower"; definately seek out a Pain Management Specialist and a good Neurologist. They are much more knowledgeable about the different types of medications and combinations of meds for particular pain. Also, DON'T GIVE UP! There are so many different meds and Neurological Diseases are very individualistic it may take some time to find meds that work for you.
Something that might be helpful is to keep a running diary of the medications and log any differences in how you feel. This helps your memory when you get to the doctor to let them know if the meds are working or not working. I keep a diary of meds and updates on how my hubby feels and it really helps the doctors.
You have found a great place for info and support! Best of luck to you....Lisa
I also struggle with pain management. I began with 1 325mg vicodin at night. Now I take 4 pills a day. My neurologist has suggested steroids which I will not take due to side effects. I have an appointment with my doctor next month to discuss our plan for the future.I'm not sure there is anything to completely remove the pain without knocking you out, but for now my pain is dulled most of the time and I can still function throughout the day. I send you my best wishes for relief of your pain.
Dr Dean Edell, a radio host Doctor, use to say grab them by the stethoscope and do not let go till they answer all your questions!! lol!
Realistically, you either need to get more assertive and say to him what you said to us and /or get another pain specialist doctor. Have you tried taking motrin for your pain? I use to get it at prescription strength and still feel it was one of best pain medicines out there plus prevents Alzheimer! but of course it does have side effects and eat before you take it or will wreck your stomach..that is what happen to me.
Hey...I have been in pain so bad that all i was able to do was cry and not move..just trade between hot and cold therapy to help a bit. My husband was addict and was stealing my pills...doctor at that time had no understand of addiction nor still does since he gives now gives my recovering husband both hydro cone and Oxycontin together! Something every pain doctor I have had says is no no.
My point is i sympathize and you are not going crazy...pain hurts and when it becomes overwhelming it is extremely hard to get your mind off it. Before it gets that strong...if you can get your mind to focus on other things it will help lessen the pain.
I don know what kind of pain you are experiencing but there has been a lot of positive treatment with acupuncture. I have tried it in the past but my arthritis pain was more specific. Now that it is all over my body I found an acupuncturist that has worked with my kind of pain and believes they can help. Massage and hypnotherapy has also helped me.
So i say call your doctor on monday and insist you get in immediately and insist he helps you or gets you in to pain specialist asap...or gives you something to tie you over until you can get in to pain doctor. Just insist on it...there has to be something they can do..just do not take no for answer.
When you hurt it can be very hard to be your best spokesperson so you might bring someone in who can speak for you and tell the doctor what your life has been like in intolerable pain daily. sorry i keep thinking of things ...apologize this is not most organized answer. hope you feel better soon...even though it is weekend many clinics are open..you might walk into one of them and who knows you might get lucky and get a great doctor that cares. If you have insurance would not hurt to try. If it is so bad you cannot sleep or function than go into emergency room...you need to get it under control.
Make noise, a squeekie wheel always gets greased. Having trouble remembering to talk to the Doc about things, make a list of questions and hand it to him at every visit. Of course you have to remember to bring it. If the Doctor don't like it it might be time to get a new Doc. People forget that we are the "customers" without us he would be an over educated unemployed guy.
Inam in the hospital right now. My doc just left with his entourage of students who all felt my feet and tested my reflexes. I tried to discuss pain management, so they brought me a Lortab 5! I can’t take NSAIDS. Due to stomach surgery 8 years ago.
DocMAc, that SUCKS, I dont have CIDP, my wife shelley does, Ishe also is in the hospital as I type. One thing I know is while in the Hospital you need an advocate, press the call button and tell the nurse, over and over and over. We are taught to be patient and submissive with Doctors. Well as a frustrated husband I nolonger wait on Doctors. I have followed then down the hall if I didn't get the answers I wanted. I know you can't do that and If you dont have someone there to help. hit the call button.
I am sorry for what is going on, my wife at times is in so much pain she can not move and is always in tears. A lot of Doctors do not understand CIDP, most Nurses have never heard of it, Tell them it is like haveing a bad tooth, all over you body. that one most people can understand.
When asked what LEVEL of pain it is always a 10. You need a nuero who knows CIDP. There are some good drugs that yous can take that helps calm the nervers. like Gabibenton and Baclofen just to name what works for Shelley. She also has Tramadol, loritabs (7.5 & 10 Mg) and a 75 mg Fentenoly patch. How ever even with these during flare ups she has pain/.
Doc wish I was there to step in for you, I like bugging Doctors now, most are real good people, but sometime you find one who is really full of sh--. But isn't that what towlet paper is for. GOOD LUCK, hang in there Russ
I don't want to blame doctors. They have a few things working against them such as not having a clear grasp on this very complicated disease and they are constantly scrutinized on writing prescription drugs. Unfortunately there are people who are addicted to prescription drugs and will tell the doctor anything to get them. Now, back to us. Our pain is real and is as complicated to describe as this disease. There is no reason to be in debilitating pain, you don't want it and I am sure your doctor doesn't either. Be strong, don't be afraid to tell your provider the pain medication is not working, and you would like to work with them in finding a solution. After reading these posts it looks as though there are incredible people here who would love to help any way they can. I hope I am not appearing simplistic or minimizing this journey I too battle pain every minute and am still working on finding a solution. After 16 years I have a truce with my breast cancer, but CIDP is a daily battle. Peace Nancy
A Patient Advocate could help, if there's one attached to your hospital or in your area or state. Gary
Patient advocacy is an area of lay specialization in health care concerned with patient education about the use of health plans and how to obtain needed care. Patient advocates include government consumer advocacy agencies, which provide services to the public at large, and private sector for-profit and non-profit service providers, which offer services to individual patients. In the United States, most states have established within their government structures an office of patient advocacy or similar function.
Thanks friends. I shall begin my search NOW.
Ohhh bless your heart i do know how you feel. I find myself the same way. My memeory really gets bad like you said with the intensity of pain as well as when i get overly exhausted when heaven forbid i have a good day and feel like doing more than sitting. I have found the medicine gabapentin 600mg 5times a day along with tylenol 3 works for me. It took me a long time before we come up with the combo its doesnt take all the pain away but its more bearable. I know most of these doctors they have no clue and lord if you really try to tell them they look at you like your a drug addict looking for a fix. You have to make them listen..the best advocate is yourself and as others have stated write your questions down and have them in hand when you go in and GIVE that list to them and yes keeping a day to day journal to show them that helps as well.
Much love and gentle hugs..amy
I don't know about you, but I am exhausted with worrying over what other people (doctors included) on how I am trying to manage my pain control. My doctor doesn't want my pain level to get so bad the medication will not be effective. I overdid it over Thanksgiving and almost ended up in the hospital from EXTREME headaches that caused vomiting and dehydration. I didn't know I was doing too much until it was too late, I'm still learning my boundaries. Like Amy I love my days when I feel like I can actually vacuum the floors and still have the energy to help make dinner, having a good pain management program helps with that. My pain is also never completely gone, but I can at least still have days where simple things are doable and I am grateful for that. Peace Nancy
I was always under the assumption that pain management was to try other things than the stronger pain medications. At least that is how it is where I live. At least that is what they call the so called "Good" pain management clinics. While going through all the doctors I have been through ending up at a neurosurgeon, he told me I wasn't a good candidate for pain management because I needed more pain medication and pain management wasn't going to prescribe this to me. Of course he also told me there wasn't anything wrong my my lower spinal cord or any problems in that region he could see. My pain began in my lower back, hips, buttocks, thighs pelvic area. It kind of seems to move around a bit now but if I do to much it all flares up. The neurosurgeon told me to go back to my neurologist and get better pain medications for the chronic pain. So he knew the pain was there.
I'm one of those lost patients diagnosed through a nerve condition test 3 months ago although my symptoms have been going on over a year now. I still haven't had a spinal tap. I tried a new neurologist that supposedly specialized in these types of neurological disorders recommended by the national association of GBS and CIDP. Wow what a nut, telling me that I had to much pain to have CIDP, didn't believe any test that I brought him just wanted to continue testing and still didn't want to do a spinal tap. Would not answer any questions except "I know you have a type of neuropathy, I just have to figure out which one." I went ahead and did the blood tests and can't seem to get those results out of him so I don't think I'll be going back to see him.
I'm on very strong pain medications and their not really taking the edge off. I was told when diagnosed that the ivig fusion would help but I can't seem to get there but I don't lose hope and I'm still fighting. For some reason I lost touch with my regular neurologist but have an appointment with him in 2 weeks. I can tell you that I was prescribed a tens unit and that does help some if none of you have tried that for pain. I"ve started getting pain in my arms too but I can't use the tens unit in certain places in my arms because it feels like the electricity is going all the way down them. But on the hips, lower back and buttocks its does great and seems to relieve some of the pain. I'm also sensitive to heating pads. They make me hurt worse for some reason. ice feels good while its on there but you can only ice for so long..............