Although. I don’t like to be told all this, these are words of wisdom Barb
It would be good to be able to take some sort of action, or find a representative to speak to doctors on our behalf!! barb
So agree with you !! It is one of the issues that makes me so angry! Of course if you are angry then you are depressed and need anti depressants, which all make me thing things that I never do otherwise and sit around and stare into space wondering what I am doing here, which I never do when I am not taking them. I can't take them and they don't do one thing for the pain anyway. It has also been researched and proven that people in chronic pain do not get addicted to drugs. This has been researched many times with the same conclusion. I also want a life with some quality in it and the doctors do not seem to understand the extent of the pain. I truly do not know how a person is supposed to live with the amount of pain and the extent and type/severity of pain that Fibro can bring. Doctors who do not prescribe pain meds to me are no better then sadists or people who torture prisoners that is the extent of the pain they are dooming us to.
Sorry to go on such a rant but as I stated this is one of the issues that really gets me worked up!!
I want a life with some quality to it and pain medication is the only thing that gives me some aspect of a normal life, not near what normal used to be but at least tolerable with the ability to do things I enjoy. I have been informed that over the counter pain medication like acetaminophen causes more deaths from liver failure each year then any of the pain medications. I also never, never have any feeling of being a "high" or any type of weird feeling that a recreational drug user would get. I understand from research that this is also true of someone who has chronic pain, it simply takes a portion of the pain away.
I also have so much anger towards the drug abusers who make it virtually impossible for people suffering from chronic pain to get the medication we need. They want to get high go drink alcohol and leave the pain medication alone and stop giving it a bad name.
I have to stop I am just getting myself more and more upset as I think about this matter. Just let me close with prayers for anyone dealing with the pain this illness can cause and with the hope that we can all have our pain controlled as it should be. Also with the prayers and deeply held wish that someday very soon they will really know what causes this illness and have a cure for all of us.
Shirley,
I am so sorry to hear that you are in that much pain. I totally understand I have been there myself. I feel the same way you do about doctors who treat us this way. We actually do have a medical need to have our pain addressed appropriately and I am not sure how to get it to the attention of the people who could make the difference. I once saw online a form that stated anyone in pain has a medical need ( it wasn't need it was worded differently but I can't remember what, more like the doctors were mandated to address our pain in a manner that would help us) to have our pain taken seriously and addressed appropriately. I am not sure how to make this happen. Maybe if we all decided that say on August 5th, 2013 everyone in this country who had Fibro and was not having their pain addressed appropriately would go to their nearest hospital emergency room at noon time and overwhelm the system that would do it. I don't know but I do know that it is proven that anyone in chronic pain does not become addicted to pain medication. Well, I have to go. You can read my Reply to the post above also. It just makes me so angry but that word is not even strong enough.
Take care of yourself and I will send prayers for you to find some relief from the pain.
Peace be with you,
Kimbal
Hi! I agree with you. I also had injections done. At first I thought they helped at least a bit but after about the fifth time, it felt better for about 24 hours then the pain came back 3 times worse then it was before. I asked my doctor if there could be a reaction like this to the injections that caused it to become worse after feeling better at first. He told me that yes, this was quite possible and happened in many people. When I told him what happened to me he said then we could not do them anymore because they would cause that flare up and he didn't want to put me in more pain. At least he was honest with me.
I don't know what to do, I suggested a nation wide date when we would all go to our nearest emergency rooms and overwhelm the hospitals with our pain symptoms, maybe that would get some attention and get someone who can help to listen to us. I don't know but the more I think about it the more I feel that unless we all stick together and take back our power and demand to have our pain symptoms treated seriously nothing will be done. It is true as you said that the research shows that people in chronic pain do not become addicted to pain medication and they do not even feel any type of a "high" to these medications. This is fine with me I do not want to be high I just want my pain levels to decrease. They never go away completely but to have some quality of life to be able to enjoy some things I like to do and to be able to do the daily chores that we all have to in order to care for ourselves in my opinion is not asking to much.
Take care of yourself, and the children, I will send out good thoughts your way.
Kimbal
I went through all of the pain management injections, and in the end, well actually from the beginning, was all the worse for it. They could either never get me numb, or never would take the time to allow me to get numb before injecting into my spinal nerve roots. I got to the point where I could not stand to be touched. So acupuncture, therapeutic massage, ultra sound treatments, even chiropractic adjustment were out. I simply had become so overly sensitive I could not stand my own skin. And I hope that I never have to even consider going through them again!
For me, in my opinion, these practices do much more harm than good, and just exacerbate the pain, and sensitivity problems that we already have.
SK One of the wisest things my doctor told me when we began this search into managing my chronic pain was that I should NOT expect to ever be totally free of it. That I would always have some kind of pain and that to expect to be "numb" or pain free was unrealistic. And so it has been.
3 years later I am not pain free, but I AM coping pretty well. That does not mean that I am "well enough" to work, or return to my usual old self. That life is over, to expect it back is also unrealistic.
I'm sorry to hear that those alternative (wonderful!) medicine options didn't work out for you. Perhaps the injections (or the injector person) were not being done correctly. Perhaps the doctor or the medical staff were not treating you properly. Perhaps it was a time that hypersensitivity really would have forbidden you from achieving any pain relief at the time. I'd encourage you to try again, if you can afford these things. I would!
I'd start with massage therapy. My therapist (at the time I could still afford it, when I was still working), told me to go NOT when I was in intense pain, but to see her when I wasn't. To go in a full flare to be adjusted (chiro) or for massage therapy was not the time to do it at all.
I'd encourage you to try again. :)
Shannon from Living with Fibromyalgia
plus they have very specific pot that works with type of fibro pain....or another kind that can help you sleep. I was in my doctor's office and all 10 of us have used it for pain and all of agreed it did help.
Problem is some pain specialist don't want it mixed with other pain drugs....i asked for science behind it and so far i yet to have one give me any ....so it is just their own prejuidice or they do not want to write the RX which would be find....but they have made it for some...if you use it than you cannot go to them.
now if they can give a good reason like one friend of mine who was on a ton of medication all at extremely high dosages ..including narcotic pain and sleeping stuff that literally was enough to knock out elephant....but she found pot did make her sleep. so she had to choose between other drugs and the pot...and it made sense to me. Not her..she got caught and they stopped prescribing her cold turkey ...i did not think doctors could do that legally as you need to tamper off some drugs.
you do not need to smoke it...i do not...they sale it in all kinds of food items like mini muffins, bran, to suckers...and much more. Just follow the instructions...because those muffin or whatever might be small...it can be two or more doses in it..so you need to break it up as it says.
and i have this machine that takes all smoke out so all i breathe in pure stuff that helps with pain..cool not hot so no coughing etc. only takes like two inhales and enough so small amount goes long ways.
I like using power strips for pain control as dr med’s never seem to work and all natural seems to work for me. What do you recommend for brain fog?
Could you explain what "power strips" are? I have never hear of them.
Thanks!
I had the same type of experience. About 4 yrs ago I had a year long problem with my gallbladder. I went to the hospital about 3 times but they would do nothing because at that point I did not have any insurance, not even Medicare/Medicaid. So I existed on fat free yogurt and bullion for about a year, great diet, lost about 50 -60 pounds which was OK I was overweight but what a way to do it! Anyway once I finally got Medicaid I went in to the ER with another bout of serious pain. The doctor was totally freaked out when I told him how much Tylenol and aspirin I used to take when I was still working. He told me that more people died each year from Tylenol overdoses then all prescription pain meds combined. They finally decided to admit me and they had put some type of tube into my arm and left it there, I guess they used it to inject medicine later that evening, I was pretty out of it by that point. I asked to go out to my car because I had packed a bag but failed to bring it into the ER with me. At first they weren't going to let me because I had this tube in my arm. I kept asking them what the problem was with that, all I wanted was my bag with nightgown and stuff. Well they finally let me get it but I had to have a hospital guard escort me to my car and back. Finally I found out they were fearful that I might inject some type of drug into the tube in my arm. I was floored! I said "What! What would I do that for, and I don't have anything to inject anyway." I just couldn't believe it and still can't fathom what someone would do something like that with what type of drug. Maybe, I am naive but I just don't get it. Then they took me upstairs and gave me an injection of some pain medicine in the tube, it was so strong I felt all dizzy and like I would pass out. The nurse said that it hit some people that way, I told her I didn't like it and please make sure they don't give me that strong a dose again.She looked at me like she couldn't believe I was asking for less pain meds but I don't like it when I can't think straight so I guess they decided that I was not a drug addict after all. They finally took the gall bladder out and I was free of that pain at least. Of course I have put back the majority of weight I lost! Oh well, it was nice to be skinny for a little while but I wouldn't want to go through not being able to eat anything but yogurt and bullion again.
Wow, I didn't realize how many people experience the same thing with doctors. I broke my foot last year and after the 10 Vicodin were gone I was prescribed Tramadol. This was before my diagnosis of fibro. The Tramadol was useless. Fast forward, the rheumy once again prescribed me Tramadol for this horrible, constant pain. It gave me massive migraines, (I don't remember that side effect from last year but life was crazy then so maybe I didn't notice one more migraine).
So I emailed that I couldn't take them because of the headaches, and she said no other opiate helps for fibro pain. I'm sorry I don't believe that, my boyfriend is a disabled marine with more injuries than I can list. He is prescribed Oxycodone and has been for almost 4 years straight. Why...due to his CHRONIC PAIN! So how does the VA understand pain and the doctors on the outside do not. I too felt like I was being treated as a drug seeker.
I don't know of any equivalent here in the U.S. It's up to the patient to be their own advocate, which is part of the problem. We have to establish credibility with each specialist, and list all the non-medical things we have tried before they will consider giving us a pain med. I have had to mention with every doctor how much I miss the days when I took two tylenol a year, and that I am reluctant to add more meds. Then they listen and are willing to consider what medical approach will work best for me.
It would be wonderful if we had an ombudsman to advocate for us. Do you find they are effective in Canada?
Hugs,
Scribelle
Yes, what are power strips? I have not heard of them.
Thanks!
-Scribelle
Dumb question: Is Tramadol an opiate or narcotic? I have just started taking it, and I am still learning about it. I had a monster migraine this week that lasted two days. Now I realize that I should write them on my calendar, as well as when I take the tramadol.
All I can find is a description of tramadol as an analgesic. I am researching more, as I was taking sumatriptan with tylenol and diclofenac before. Now I only use the tramadol & sumatriptan because I am unsure of what category tramadol fits in.
Thanks!
-Scribelle
One last thing my husband read that there is strong possibility that Vicodin is soon to included in controlled substance drugs. So that is going to affect even more people. The logic behind it is that vicodin, hydrocodone,etc, is one of the top addiction drugs.
So those who right now using it long term might want to write your representatives to try and keep it off the controlled list.
I just wish i had better idea to deal with this serious issue.
Tramadol is a controlled substance in 2 states and is in review by the FDA to be see if it should be added to the controlled substance list. What will the doctors do when their new "go to" drug is also a restricted drug. What hope is there then for anyone with pain. Tramadol does not work for me, but it does help a lot of people.
Hi 5/7!
Whoa, I had no idea! This did not work well with me either, but nearly every fibro patient here takes it, many with TN, one of the most painful things known to man find relief with this drug. Thank you fro including this.
Wishing you well,
SK