Well I went to my 1st of 8 pain management classes @ $70 a pop. What BS! I’m so freaking frustrated. Apparently I need to manage my pain with exsirsize, diet, and positive thinking. WTF! I want to scream right now. I sat for an hour and a half in the worlds most uncomfortable chair, listening to how ninja and navy seals are able to be trained to not feel pain. Well that is awesome for them isn’t it? So I’ve got 7 more BS CLASSES to go to it gets better though cause this was a short class the rest are 3 hours long. I guess by the end of Febuary I will officially be a ninja or a navy seal. All my pain will go away if I just learn to breath from my diophram. Ya well guess what I told myself I had no pain, unfortunately myself didn’t beleive myself. Has anyone else been fed the crock already? How did it work for you? I’m going to continue to go because as it is all I get for my pain is 40 hydo condone 600mg ttjay I have to make last for 2 months because, well truth is I really don’t know why. 40 600 mg Morton’s to last that same too months. Really? Seriously. It says right on bottle take every 6 hours as needed and I have to make 40 last 2 months. Sorry guys about the bad attitude but I’m pissed. Maybe I should just throw myself under a moving truck, and tell myself it don’t hurt. If their theory is true wouldn’t that mean you could kill yourself just by thinking u are already dead. This makes no sense. Guess I should start smoking weed, and buying pain pills from high school kids, who have a hell of alot less trouble getting there hand on it then people who actully have pain! GGGGGGGRRRRRRRRRR!!!
I have never gone to a pain management clinic, but I would not be pleased to listen to this line of talk. No wonder you are utterly frustrated today.
Oh, Cindi, I am so sorry about your frustration and pain. I am not sure I understand the classes though. Is this something you are required to attend in order to see a pain management doc? And what is their deal with the meds? No one can last two months on 40 pills when you are supposed to take them 3 times a day- hello, dumbass, that’s 180 pills! Why do things have to be so difficult? My PCP says no to pain management. H says that PM here means procedures and injections and then they send you back to your PCP for pain meds. So I guess I will stick with my PCP and rheumy for now.
I am not trying to upset you or aggravate you in any way and please don’t take this that way but exercise has helped me a lot. I walk almost every day and I do gentle beginners yoga almost every day. Sometimes it is five - ten minutes of each and some days it is more. Please give it a try- I was pleasantly surprised at how much I enjoy the yoga. I scoffed at the rheumy who suggested it but said I would try so I did and I am glad. She also suggested swimming but I balked at that idea as I hate swimming for exercise (long story). As for a positive attitude, yes, always helps with everything. There is a whole discussion on that topic, or maybe more than one. I am not saying that any of these things will cure you- not by a long shot. But even if they make you feel 5% better, that is something.
Hope you feel better and that your stress level has decreased. Hugs, MB
Hi Cindi,
I understand how you feel. I have been going to the pain clinic for over a year now but I am slowly getting results. I am getting results from not the pain clinic..but from a neurologist associated with the pain clinic.
I have a schedule of:
Hydrotherapy (helps my body relax)
hill climbing (for endurance and to strengthen/rebalance my hips - this has really helped me)
osteo, physio for muscle stiffness and alignment
Meds: Endep (a game changer in my case) pain relief and sleep
and Epilim (muscle spasms)
In addition I take an awesome australian supplement which is a live(bioactive) superfood mix that works like an anti-inflammatory.
I still have pain in the main pain points (especially in my sacroiliac joint the suggested culprit of it all) but most of my other pain is gone. My bones don't line up so I have a soft tissue/ligament problem that is still undiagnosed.
If you want to know anything about my treatment just let me know on here or contact me on skype: mikeydut
Mike
I've never been to a pain management classes either. I couldn't sit through a 3 hour class. I would not be happy either. Hopefully you'll get some benefit from it.
On a lighter note... if you end up being a ninja, let me know. I'd love to be one. Lol.
Sorry you had a bad experience. I really hope you get some help from it. They have to teach more than breathing if you have seven 3 hour classes. There must be something useful there...
Thanks everyone. I do believe what they are saying to a degree. I do know that staying positive will help, since stress is a major factor with FM. The more you stress the more you tense up and tense muscles cause more pain. I do know that exercise helps on a couple levels, and I’ve already before this class started Tia chi, which I am loving, to me it’s more like stretching and meditation in one plus 0 impact. It’s like yoga only I don’t have to get on the floor. What bothers me is I was under the impression that I would reserve some help with my meds. I am curantly not taking any meds to help with my FM. Just pain meds. Wich will not help improve my symtomes. So I feel like I’m expected to relieve all my symtoms with excersize, diet, and mind over matter. That is what is upsetting me, I do beleive, the things they suggest will HELP! But telling myself I don’t hurt aient going to work alone and neither are my pain meds. I was hoping to get a treatment med, not to cure me but to atleast give me some releif and maybe a little sleep.
Cindi, I think that's very reasonable... if you've been diagnosed with Fibro, why isn't your doc treating you? Maybe you need to look for a new doc. I personally want meds to help with the problem, not just pain meds to mask it. You have every right to be frustrated. :/
My daughter suffers from migraines, she refused medication because they would interfere with her job more than the pain. She refused preventative drugs due to the side effects…not an easy thing to do when you’re in the navy. As last resort, she was going to try biofeedback. She went to 1 appt and then was medically retired from the navy. She is a huge skeptic, she did say that she thinks there may be something to it.
The person facilitating your class seems to be a real birdbrain. But hey, maybe, just maybe, it will work on some level and you can give all of us ninja lessons.
I can relate. When I was at my worse I wanted to yell at people that sugested things either I was not able to do or things I had tried. But I really do not get why a three hour class. The ears can only hear what the ass can tolerate. Please give the things they suggest a try, even a half harted one. You may just find one or to tricks that work.
I am not a religious person but someone had suggested meditating on " This pain is a gift from God." I thought it was stupid. But oddly it seems to work. I tried it one day out of desperation. It seems to rewire my brain a little bit and make me laugh, cause it is so dumb. I do believe that some of my pain is not real pain,ie like when my foot feels on fire or it feels like someone just hit me when all i did was move. That pain breathing exercises and "this pain is a gift from God" meditations seem to work. There is also a meditation were you say the sounds to A,E,I,O, and a deep y. then ha, ha, ha till you break out in laughing. It is meant to tune your bodies vibrations to where they should be. I don't believe it but it is great to do in the shower. And it oddly does help me. There are also some pain management apps on Iphone that I may try.
Ask your doctor why you got so few pills. It may be an insurance thing. Then call your insurance company.
Please do not cause a truck driver have a bad day.
Hi Cindi - It's Laurie. What an odd way to introduce you to pain management! First of all Ninjas and Navy Seals are in a whole different category than what you are in. Jeez! They haven't had pain for years and years like us! Uncomfortable chairs don't help either. I have no idea what in the world they are going to be doing to help you with Pain Management, but I commend you for wanting to finish the classes. Me??? I would've probably walked out in the middle of the session! LOL I hope this won't offend you, but my Dad was a doctor, and as far back as I can remember, He HATED Kaiser! An awful lot pf patients were dissatisfied with Kaiser's services and many were sent to my father to correct whatever damage they did. My nurse tried to get me involved with a Pain Management group here, in Nevada, but my insurance wouldn't cover it. They are supposed to be excellent, so I was really disappointed that I couldn't get in. As far as doctor's not giving you enough meds to get you through, I agree they never give you enough till your next appointment! Been there, done that! If I need pain meds, which isn't very often, I will get 30 to 35 and this is supposed to carry me over for three months! Maybe the docs didn't learn Math in school?? I have told the group since I first became a member, that Fibro and the meds we are given are usually a 'trial and error' thing until doctors get it right. I feel like a guinea pig sometimes.
I feel very badly that you are going through this, because every time there is the slightest chance that we can help ourselves. and it falls through, it's such a disappointment to us, you know? Don't worry about your bad attitude, Cindi You have every right to be pissed off! They say that ''all your pain will go away if you just learn to breathe from your diaphram???'' Really?? If this were true, none of us Fibros would ever be in pain! Ugh! Don't get me started on this, it really pisses me off!! LOL We all have to go through SO much to get the answers we need to help ourselves. The delays, fake promises, meds that don't work......it goes on and on. Cindi - even though all this is a struggle, please don't get discouraged! Also - i don't want you throwing yourself under a moving truck - although at times we all feel this way sometimes. If you are serious about following through with the Kaiser pain management, please keep me posted as to what they are doing to make you feel better? If you feel the sessions are not working, it's okay to leave and go on to something else. I also commend you for doing all you can to make your life easier. BIG gentle hugs!! Laurie
I went through something like you are going through, Cindi. Spent 2 years in a pain management clinic prior to my neck surgery. It included sessions on positive thinking, hours of biofeedback trying to train my neck, shoulder and head muscles to relax by the use of deep breathing and visualization hooked up to a machine that monitored the spasms in those areas. Of course it would work while I was in the chair, but its not something I could do at work, in the car, etc. when the pain may be unbearable. I never understand how docs believe that this is a long term solution to a problem! I ended up having two herniated discs in my neck and the neurosurgeon asked me how long I planned on waiting for surgery? When I told him what I was doing he just laughed and said he was sorry I had to go through all that. Now without any major problems besides not sleeping, constant pain and chronic neck, shoulder and back pain - I do the deep breathing but usually when I’m trying to sleep or reduce pain while resting. I could never sit through a 3 hour session and if I were you I would tell the instructor that you need to sit in the back because you have to stand periodically. The docs may only be giving you the minimum meds hoping the sessions work for you so you’ll need less. So if you are getting near the end, contact them and tell them you need more! I feel your frustration - take care.
Omg my heart is breaking for u . My primay first said I probably had fm then sent me to a rheumatoid specialist saw him one time got a shot n my shoulder and blood test that confirmed I had it. He gave med 60 5/325 Percocet. Then sent me to a pain management specialist im now 4 yrs later on 160 10/325 Percocet and 90 zanaflex (musel relaxer) xanex 90 and moloxicam for arthritis im only 43 iv been really bad for 5yrs . I cant believe they have u go to classes like this were do u live cause im not going there. I feel u and I think these classes r a load of bs.
Trying to walk as far as I can was my mistake. I did better just walking around the block every day. Now I can do over a mile. But on some days I only to .8 of a mile( the least amount that will calm the dog for the rest of the day) Sometimes less is more. Can you do a block?
I hear you loud and clear because I went through the same B.S. a year ago. Go ahead and scream...that's what I did and felt better after for doing it. I think it's called the Primal Scream.
During the so-called lecture on pain management that I attended...there was a double amputee man sitting next to me who suffered from Phantom pains. When the young gal giving her pep-talk said "this can be controlled by positive thinking" I truly thought that poor man was going to throw his wheel chair at her. He shouted:::"I drove 5 hours to hear this bull****!...needless to say - thus ended the lecture for the day.
That being said, I do know another FM gal who is getting SOME relief from going to bio-feedback sessions, massage therapy, and is on the Fentanyl patch.
I don't think you have a bad attitude...nope.....I think you have every right to vent!!
If anyone else on here has got 'relief' from pain management lectures...I would sure like to hear your input.
Gentle hugs to you Cindy. I am so sorry you have to go through this. I have fibro and Ehlers Danlos Syndrome and understand how frustrating the pain is. One of the leading experts on EDS of which there are very few because it's considered "rare" (I think it's under diagnosed myself) has a pain management strategy that includes using things like you mentioned, plus the pain medication, and more in a "percentage" way of dealing with the pain. I can ask SASO from the EDS Inspire boards if I can post her note on it here if it would help anyone. The Ehlers Danlos National Foundation is www.ednf.org that's where I learn a lot about how to deal with what I have. There is a good pain management document there written by a member but since it's for EDS I'm not sure how much it would help. I wish you luck on finishing the rest of the classes and I hope things get better for you.
Susan W
HI geranium - We have never emailed to each other before. My name is Laurie. I am so sorry you went through all the BS for nothing. 'Controlled by positive thinking??' Please! I think the woman who was giving you the pep talk, mostly likely doesn't even know what FIbro is! SO many of us are given the 'run-around' with our problems and it can leave us feeling pretty hopeless and isolated. .......And to think you drove 5 hours to here this woman speak!In solving the 'mystery' of FIbromaylgia, unfortunately we have a long way to go. Pain management is one of the biggest negatives that we face. In being a member of this wonderful website - I am stunned at all the meds that are given to FIbro patients, and nothing seems to work half the time. It seems, sometimes, that the only things we can do, is to resign ourselves to constant pain and not being able to get around. I am sorry if I sound so negative, but its so damn frustrating to me when I hear about people getting their hopes up about something new to help us with our Fibro, only to be let down again and again. I truly hope and pray, that in OUR time, that something will be out there to help us and we really need to bring Firbomyalgia up to the front and get the Medical field to pay attention. They are too lax on this subject. Laurie
lol on the dead remark! Pain management is a difficult practice. They are damned if they do and damned if they don’t. Some are not so kind about it. My brother got a call from his pharmacy saying could not fill his script. He called the pain center, and they claimed he had missed the last 5 appts. Boy was he hot. He told them he was on his was to get this straightened out. He has never missed an appt. he had a wreck where he was hit by a govt truck and hit into an 18 wheeler. It was like an accordion. His whole body is falling in on its self. It’s his birthday, and I’m pissed. You don’t mess with my little brother.
I only get 45 Nyucenta every two months. This ticks me off also. I was only getting 40 until I came in a couple times in really bad shape w/o a scheduled appt. Patients become addicted. The drs are in a Catch 22 situation.
What can we do? Through Facebook, I found a dr who will do Botox on my back and shoulder. My pain dr said there was no way to get it approved. Hope for tomorrow.
Fentanyl is dangerous. I was on it and all these bad things came out about it. My PCP called my former pain center and blessed them out. Be careful.
Cindi I wish you were here because I would just give you a big hug. I think we all need to be taken seriously. We are not making our pain up, it is NOT in our heads. I believe these doctors have a conspiracy; you go from doc to doc until they can't do anything more for you and they can't give you anymore medication. At the end you wind up with a chronic pain doc who then sends you to a phycologist to find out whats going on in our heads. Then they try to teach you how to manage your pain with breathing, exercise and positive thinking! and blah blah blah. So, what these docs do is really lead you to this point because really they don't know how to help us anymore; they can't give us anymore pain pills. I asked about weed and he said no. Isn't that better than taking pain meds? I wanted to scream at my doc the last time I saw him. He wants me to start weaning off my meds and take some cognitive therapy and see this phycologist. My question is why would we make this pain up? It leads to nothing beneficial. I am no longer working, can hardly walk, chronic pain everyday, I'm tired all the time, can't do the things I used to, and although my husband has been wonderful, I know he is getting frustrated with me since I am very forgetful, drop things all the time and really, I am not the same person I was. I was happy, working, was social, loved shopping, and now I'm like a zombie. It's horrible and I really, really try to be positive but it is SO hard when you are in such pain. The only time I really feel good is when I am sleeping and when I'm in the pool which I obviously cannot do 24/7. Anyway, I don't blame you for being pissed; I am too. If I were you I would not go to anymore classes, and most importantly, I would find a new doctor who gives you medication to ease some of your pain. It might take awhile to find something but you have to keep trying until you find something that works for you. I do, however, think relaxing, some meditation and yoga are good to do if you can, but it's not going to take your pain away. This illness sucks, I hate it, I'm frustrated just like you. We just have to take one day at a time and hope someday that there will be some kind of relief for us like NOW!!!
Kaiser is a different animal I think.