Last post Wed, Apr 16 2008 5:10 PM by MaggieRay. 27 replies.
Hi, I hear and truly understand the frustration and anger . I sincerely believe without "physical appearance of illness" many fail to believe, thus treat pain patients'. I have spent greater than 8 years going through the process of pain treatment and realized how little is known. I would look at various pain management programs. NO THEY ARE NOT THE SAME!. The section within this web site concerning pain is true for me, the narcotics knocked me out, however, to overcome the pain I lost so much more. All under a doctors care! Even sleeping I would moan and groan and cry out in pain, wondering why I could not remember any of this but knowing how exhausted my days were and pain escalated. The process identified from creams, anti-inflamatory, anti-seizure, sedatives, narcotics, nerve blocks, tens units to a realization one day. Enough, I was losing my liver function gradually, unable to participate in my life and behavior modifications, feedback etc. time fillers. Yet for the moments of no pain or like you just to do normal exercise or some function and life activities. I even went to China to visit someone and investigated all their treatments, not my best idea. I Beautiful country, but my husbanad lacked the support and time to help in this process, he got burned out I guess since no "cure" could be found for me also I do not know Chinese!
The chronic pain and intensity resulted in crisis diabetic situations, I went with the neuroimplants stimulator. It does not cure and at times not work at all, but I have some control over trying to overcome my pain to a small degree, versus being the victim. Please hang in there, it is slow and tedious and not sure how canadian health care allows consultations to pain specialists. Please read the treatment process on the main site here for pain medications and restricitions. I have RSD and degenerative cervical damage, many more aare worse off I know, but when the physical pain drains you constantly, your patience dwindes. I am a health care professional and educator and felt the betrayal you are projecting at my professional network. I hope I helped, Good luck, but some manufactures of pain devices have excellent web pages to help explore options. Also many of the medications that are given out as my primary physician said" accidential overdose, due to mental impairment and amnesia effect s of some can lead to incorrect dosaging without really total awareness by me, really made me look to other options".
not be judgemental, just would hope you could look at some other solutions maybe... instead of illegal stuff.... or hording so much anger it is only consuming your energy. Be there with so much anger none left for relief.
I too still work for a moment of relief.... remember your never alone...... sending support and caring. Not trying to be judgemental so sorry if it came out that way. I just wasn't one whose body could accept the treatment as others.
maryanne, hi,my name is ted and i truly feel for you. i have suffered fron horrible constsnt pain for 12 years, following botched back surgery-my sciatic nerve was "nicked" (MD's words!) Fortunately I finally found a terriffic doc who both understands and is symphetic to my condition. she sees me every month and has me on: Tylenol 3, oxycodone, lyrica, neurontin, the antidepressant nortryptiline, clonopin, xanax, and is always genuially happy to see me and discuss my meds and make adjustments that I suggest. I work in health care and am certified to dispense meds in my state, ma,only. i can transcribe new scripts, write orders, deal with pharmisists, give all meds except injectables, and the md's i deal with each week always listen to my sugestions (90% of the time)......so i clearly have advantages. i went through hell initially though-i was told to try physical & psych therapies, accupuncture, chriopractic, etc. just about everything except vodoo, witchcraft, and religious hands on healing. I agree that we all KNOW our own bodies. MD's are actually afraid to dole out narcotic meds. you need to be referred to a pain specialist pronto. I save all my X-rays and reports! please feel free to Email me; ted2468@peoplepc.com I have some ideas for you. hang in there, help can be found. ted
Thanks so much for the support and encouragement and caring advice. Yes, I was pretty angry and totally frustrated and fed up when I wrote this one, and I still have days like that, but I am getting so much support and feeling uplifted by everyone on this site, it is helping a lot. Sorry this took so long to respond to, but my computer has been seeing the "doctor" lately also. Seems to run in the family! LOL
Thanks again for your kind and thoughtful words.
I am hanging in there and will continue to do so, especially with all the support being offered here.
God Bless you all!
Gentle Hugs,
Maggie
Hey Maggie
do you go to your Dr visits with a list of things to ask? it is very hard with so Dr's they want you in and out so it can be on to the next paitent.
I have been on meds of one kind or another since I was 7 yr old with my different conditions. `it sometimes takes forever to find a Doctor that will help you find the right combination of meds that will help you the most.
so like Neurontin , others like Lyrica which is suposed to be very helpful for fibro, but it also make some gain weight
yes your right it'all that you can do, keep on trying
hugs
Meliaaa
Sorry I am so late responding, Maryannlee, but my computer was at the "dr's" for a week and I am just getting caught up with messages now.
Thank you so much for your words of encouragement and hope and the sound advice you are giving. For some reason, I seem to be working through the anger and do not feel quite as angry as I was when I wrote this one, so that is a relief. A lot of the reason for that is, I believe, being able to work through it with such good and understanding people here on Disaboom, like yourself. It is making a big difference for me to be able to "get it out" and then move on. Thank God for this wonderful site!
I did get a few suggestions from other members also and I will be taking a list to inquire about with my doctor. So far, she has listened whenever I asked her about medications and which would be possible for me to even try, but there haven't been many she would consider for me, mostly because of addictive factors, but also because I cannot stomach anything like anti-inflammatories and if the drugs have that component to them, she knows my stomach won't handle them. Unfortunately, for Fibro and arthritis, these would probably help me a lot and they don't yet make patches for those drugs so we could bypass the stomach effects.
That is something I don't understand, though, is why don't they make those in patch forms as an alternative? You would think that would be the solution to the damaging effects that those particular drugs have on the stomach. If there was somewhere I could go to make that suggestion to the pharmaceutical companies, I would love to do that.
I also think my dr is waiting to see the results of my visit to Dr. Saul (the Fibro specialist) in Toronto at the end of April. Unfortunately, I am not a patient person when it comes to being in pain and I hadn't thought of that. I am hoping that if he is willing to prescribe something better for pain than the Tylenol 3's, that she will go along with whatever it is. I know sometimes the General Practitioners don't like to be in a position of liability when prescribing addictive medication, but maybe if the actual recommendation comes from Dr. Saul, that would let her off the hook that way. I don't know, I'm just guessing, but I think it's worth considering.
Anyhow, thank you again so much for caring so much about my dilemma and trying to help me work through this anger period. I have been finding that with pacing myself very carefully throughout the week, I can get things done without suffering quite so much. Changing that "Type A" behaviour has been quite a challenge for me, but it is paying off. I'm starting to know instinctively now what I can handle and when, which is saving me from some of the really intense pain periods. So, little by little, I am figuring it out, and I am trying to trust that God is leading the way and he knows better than I do. Not easy for someone who likes to "drive their own bus", but I am learning. LOL
I just can't tell you enough, though, how much these postings are helping me, so God bless you and all the others for your warm and compassionate responses. It really does mean everything to surviving through this.
Hey, Melissa! So good to hear from you again. Just got my computer fixed so it is finally running good again and hopefully will be now for a good long time. It doesn't take long for the e-mails to pile up on here! LOL I had like 156 or some ridiculous thing like that when I finally got back online to check. So, answering has been taking awhile! LOL
Yes, I have a few suggestions from other members to take to my dr again, and she usually gives me her honest opinion on them. I only got this dr a year and a half ago, so she has been careful to try and get to know me a little better before taking any chances like with addictive medications. I understand that, but resented that I was left to suffer through this process. I have been able to figure out how to pace myself a lot better, though, the last few months and that is helping a lot. I am trying to make the Tylenol 3's prescription last as long as I can to show her that I am not taking them addictively, and that my help to win some of her trust in that area for the next request. Also, I think she is waiting to hear what the specialist will say at the end of April, so I know I need to be more patient at least until then. Maybe if the recommendation for a pain med comes from him, she will be more receptive to it. I don't know, I'm guessing, but I hope so. At least it's something I can work on being more patient with and hope for some good results from that visit.
I am not feeling quite so angry now, and I must thank everyone like yourself who has tried to support me through this really tough period, cause I think it has made a lot of difference in helping me to not focus so much on the anger anymore.
So, I do hope you are doing well and I can't thank you enough for your kindness, caring and support.
You are an angel and all others on Disaboom who have been so supportive and encouraging. I don't know what I would do without this support system now and I am so truly grateful.
Hi, I also have ) O.A. and was taking indomethacin. It was only suppose to be short term, but it ended up being several years. At that time my stomach and kidneys were really giving me problems. I knew it would happen, but it really worked on my back and hips. Anyway my family doctor gave me a script for prilosec prescription strenght. Took about 2 weeks and I was back on a lower anti-immflamatory but my stomach eased up a ton. Its not a pain med its to repair damage done from this and other kinds of medicine. Oh, and the cymabalta works alot also. I didnt see anyone with this info, so I thought this may give you an idea. You can so some research and see if you want to discuss this with your dr.
Good Luck
Kim
Hey, Kim! Nice to meet you!
Thanks for the suggestions, I will write the indomethacin down on my list I am keeping for next dr's appointment. I have been on a stomach pill, but couldn't get Prilosec cause it wasn't covered under the Provincial Drug plan here (Canada). The ones I've been on I've had to take for a good 6 months now, but they are helping. I take 2 per day. They do help me tolerate the Tylenol 3's, and I couldn't before, so thank God for that! I also cannot take Cymbalta because even though the stomach pills are helping, my stomach is still going through repair from the anti-inflammatories and the dr doesn't think it would be wise for me to take the chance on any other ones. I don't always like the answers she gives me, but I do agree with that one. I'm afraid to even try one anymore after what I went through with my stomach.
Hope you get the pain meds that work for you - good luck on that.
I''ve lived with Chronic pain since i was about 12 yrs old. Though then it was tolerable.
I'm 46 now and in the last 10 or so years it has gotten worse. And wont' improve it will only grow worse.
Spinal problems since birth - umm wrote a book on the welcome board.. coughs.
I've been on Ultram , Naproxen-didn't touch this sort of pain, Celebrex - didnt' touch it and i was on it for 2 months , Ultracet , Vicodin-think that's the one they removed off the marker - and actually worked - after it was removed they put me back on Ultracet which isn't working any more. I am suppose to take 1 every 6 hrs.. one doesn't even phase it on most days. I take 2 every 4-6 hrs. 2 might notch it down abit but might not. I can't get my dr to understand the kind of pain i live with. I also have Neuropathy - feet / legs and starting in my hands, his brother put me on Neurontin for that and i could've kissed the man, least i have relief in that reguards.
I have adverse reaction to meds - the two i take - ultracet /neurontin - induce Insomia. Drawbacks i suppose.
My doctor already told me he won't put me on narcotics.. they're so bleeping afraid of people becoming addicted so they really don't want to treat the real problem - the pain. What works for one person , doesn't work for another, cause everyone has different pains, different reasons and not everyone becomes addicted.
I cant' sit much longer - already starting to hurt..
Cloud
Lyrica is a big improvement over Neurontin, and also has a mild mood component which is nice. I did not gain weight, and it helps digestion, so it may be easier on everyone's stomach issues. Also, my very nice doc has said that when he has prescribed narcotics as necessary, I am not "addicted," but "habituated," and the difference is whether you want more and more, or if a certain dosage can be established and maintained. (oxycontin and methadone, eg.) I don't think much of most traditional doctors ihere in the US, but I think it is important to shop around like you would for anything to make sure you are getting all needs taken care of. There are some good doctors available. It is also important to remember, however, that all of this stuff, narcotic or not, even ibuprofin, has to pass through the liver and will eventually have an effect. Meditation, self-hypnosis, can all augment whatever meds we take. Also, exercise in an indoor warm pool is the very best yet for almost every condition unless it involves skin scales. Hard to find, but the arthritis association says anything over 84 degrees is warm enough--I like about 89 but it is hard to get folks to heat a pool that warm because it is not good for lap swimming. Also, a heated whirlpool is heaven, and if it is large enough it is possible to stretch in the whirlpool. Try a combination of meds and modalities. Also massage for some conditions will help. Good luck to all.
I hear ya, Cloud!
Got the same problem with my dr, but am seeing another one at end of April and hoping that results in something...anything...LOL
I believe we should be able to make our own informed choices and not have it controlled totally by the doctors, but I'll likely be six feet under before we see any changes like that come about....here in Canada anyhow.
Hang in there, and nice to meet you!
Thanks for that suggestion, Sad, I will add it to my list of inquiries with the specialist on April 30.
I also found out about a chain of Centers for Fibromaylgia and Fatigue in the U.S. Their website is: fibroandfatiguecenters@bulldogsolutions.net.
I am in Canada, so can't take advantage of them, but thought anyone in the States might be able to look it up and see if there is one in their area. They seem to have a good handle on all the testing to do and are unique in their individual approaches to treatment. Let me know if anyone has good results from using this and we will pass on the feedback.
