living with chronic back and more

By angel07 Thursday, May 22, 2008

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Hello to all! wishing everyone good days ahead. well indeed I suffer extremly bad from back pain and its very frusrating as to be going to doctors appointments the last 3yrs .I have seen 2 pain doctors 1 that could do nomore and now my 2nd one well after 1 yr with him he does a trail for the morphine pump well well I felt great 1 day out of how many did I say oh ya 1 day out of 365 times 3 thats a long time. he sends me to anorther doc thinking Iam going there to talk about having the pump put in I was really disapointed after that appointment, but anyways he is sending me for some testsing that no one else did huh I always said to a close friend of mine Why in the world are they not looking into more tests there has to be something besided MRIS and Xrays so I will be going for a test called EMG/NCA for those of you who does not know the meaning of it . It is were they stick needles in you and shocks go through your body I have heard alot before about it they say stay away if you can very painful, so Iam not looking forward to it at all anorther 1 is a disogram and then a simple xray. not only do I have the back pain but also neck pain and alot of headaches as we all know chronic is chronic I am very happy and thankful I found this site as it helps me alot. has anyone ever had any of this kind of tests done?? well god bless you all Angel07 thanks for readind my post wish all the best

The Father"s love letter hope all enjoys God Bless A friend gave me this yrs ago It really does help

Comments (20) | Add comment

Tina

5/29/08 1:06pm

I read your stuff and I want to say, as a chronic pain sufferer, that I hope that you can finally get your pain management under control. Please check out my site on chronic pain and give me your ideas for betterment;)

http://chronicpain.today.com

LAURA MUSHKAT

5/29/08 5:31pm

I have pain brought on by all types of spine related problems including fibromyalgia and spinal stonosis with a bit of siatica thrown in and some arthritus! Needles to say I have lots of pain. I also am Diabetic. I see an endocronologist who wont let me take a lot of junk for pain because it ups the sugar count in a person. Years ago he gave me Ultracet which has done wonders for me. I was often able to live almost a normal life. Then when my husband died and I had lots more stress to deal with my pain has gotten gradually worse. My doctor wanted me to go on ULTRAM ER and gave me samples. This is a wonder pill! It is very very tiny and is a 24 hr pain reliever. You need only take it with or without food once every 24 hours and it slowly gives you pain meds thruout. My problem is money. My insurance only covers the ULTRAM that is where you take a pill every 4 hrs as needed. So I will take that when the samples run out. I would explore this with my doctor-unless you are allergic to TRIMODOUL which is what it actually is. They come in different strengths.

Ultracet-trimodol and "tylenol" (this means you can not take tylenol during the time

you take the pill.

Ultram-tridmodol

Ultram ER the time release pill

Good luck. Never heard of the stuff you are going thru. Either the tests or the treatment.

Hugs

Laura-questions? email me at lauramushkat@yahoo.com

Mattsmon

5/29/08 8:11pm

You certainly have my best wishes for your struggle with back pain. My journey is now 14 years long and I was one of the lucky ones to have a morphine pump put it 6 years ago. I have been on the same dose of meds since then, which is fortunate. I have had the tests you are talking about and the more painful one is the discogram. If you can, have your dr. prescribe something to relax you prior to the test as it makes it less painful, just make sure someone else drives you there and can take you home. The EMG where they test your muscle function is bothersome, but not nearly as much. Both tests should help the dr. determine the cause of your pain, however, I feel I should warn you that sometimes, no matter how many tests they do, the cause cannot be found as in my case......mine is what they call "failed back syndrome" (due to multiple surgeries and collapse of hardware). If you are able to try the morphine pump, it may take some time to adjust, but you might do well on it. It gave me back a life. The key is to find a dr. who works well with you and whom you can trust.

Best wishes,

Mattsmom

angel07

5/30/08 8:10am

Hello and thank you for your input!!!! Yes I had the trail injection for the pump and then went to see the doc that does it ands he says Iam too young pushing 45 huh that was the only thing that worked for me and as you are aware Iam sure what a difference it has made for you ans your well being, I also smoke which is not good and no surgurin will touch you if your a smoker so Iam told. willing to quit its a sad thing as days go by and nothing has chaNGED FOR ME IN THIS matter everyday its gets harder and harder, geting out of bed is like a job Iam sore achy and feel as if I cannot move alot of weakness also I cant belive it would take this many yrs to find out whats going on yes the test I heard is painful, emg/nca I think I can handle the orthers as I have been through so much Iam happy to say that if the pump is working god bless you only wish they would have not puy me through all and to find out they can not do it was and is a great disapointment on my behalf good luck and stop by soon they also said the same for me back fuialure symdrome must be a new thing along with fibromylia also they have told me all kinds of things no instabilty in my back degentive dici disease cervil as well now I have been getting pounding headaches on top of all

Mattsmon

5/30/08 9:19am

I think you need to find a new dr. I was younger than you when I had the pump put in, so why they would tell you age had something to do with it is WRONG. It may be the smoking thing which you already know is the worst thing you can do to yourself. Perhaps you can get help quitting (I did it cold turkey, which is the only way I could) and then the dr. might decide differently. If you are that young, hopefully you have a long life in front of you yet and more the reason you should be able to live it pain free! Check out some different drs! Best of luck!

Matt'smom

angel07

5/31/08 2:32pm

Hello there and thanks for your reply well indeed I never heard that you cant have the pain pump age huh smoking yes I do understand that , I am willing to quit but he made nothing of it after having the trail and being I did so well I cant belive they wont do it!!! it was and is the only thing that has helped me I have seen 2 pain doctors 1 yr with one and 1 yr with 2nd 1 already,they are suppose to be the best here in Buffalo New York well I can say its very frusrating on me as the pain is controling my life and it is Iam not letting it it just wont ease up any Iam have been and still am doing so reserch to find a clinic maybe cleavland of something but remember the doc has to give the ok huh good luck to me. after all yrs of suffering and basically have no life and all I lost on will never be made up never my hoildays are runed my birthday is awful I really dont even know how Iam walking Iam but in a great deal of pain I wish you the best and thanks for stopping by please stop by again can I ask you a question?? Iam fairly new and dont know how to get my answers it goes to my email and then I try and get nothing thank you wish you the best also I would like to chat with you about the pump anything you can share would be appreciated as I would like to know more about it how long have you had it?? does it really help? on a scale from 1-10 where re you now thats great if it helps you and were very lucky to get some pain relief this has been extremelmy hard on me and my best friend which it withdrawls no only me but him as well and my few orther they just dont want to hear it or be around you know how that makes me feel not good I can only do so much myself

Mattsmon

6/ 1/08 7:51pm

FIRST, keep looking for a new dr. If you did well on the trial for the pump, there is no reason I know of (except the smoking, which has to do with blood flow and loss during surgeries) for you not to have one, considering insurance coverage. Mine has been in for 6 years and instead of being 15 on a pain scale of 1 to 10, I am generally at a 5, which I will take! Yes, after several adjustments, I am very fortunate and Thank God every day for the pump. I was taking so many oral medications and just needing more and more and more that I knew I had to find something else. The pump is not cheap.....the surgery to place it is in the tens of thousands and if you do not have insurance, keep looking for help. I am not saying it was easy to adjust to, but the pain relief once you find your correct mixture of drugs is WORTH all of the aggravation. Mine is inserted in my stomach, right lower side and it did take a matter of weeks to get used to it being there......at first you just want to pull that foreign object out, but it becomes part of you. I used to be much slimmer, but now my fat has filled in and the pump just sits there! You can feel it on the outside and you have to be careful with activities (no more step aerobics) but for someone in agony, it has been my best decision. QUIT SMOKING!!

SECOND, I know EXACTLY what you mean about people being sick and tired of you and your talk about pain. That is a burden all chronic pain sufferers live with. The key is to try and bear as much of it as you can, get the correct help from an UNDERSTANDING and SENSITIVE Dr. and find a friend (or use this site) who you can trust and share what you can. You are not alone.

Matt'smom

janet

6/ 5/08 10:29am

hi yeah,i'm on my 2nd neurolgist after the first 1 didn't do much for me after a while.i've had the needles & shocks on my legs.to me it wasn't so bad. as a matter of fact i have some neuropathy(i think that's the word) which means i don't feel everything in my legs but when the shock got to my foot near the heel.EEEEEEEKKKK!!!! i have backpain too due to a deteriorating disc & arthritis.i'm unable to do my job & may have to try a desk job.i have always done manual labor & my body's protesting.i didn't remember the names of those tests.the needles are little pins.i'm guessing that it won't be as bad as your back pain & certainly wasn't as bad as i'd feared.

jewel

6/ 5/08 12:29pm

Angle 07, My Name is Jewel and I have had chronic back pain since 1956. It became

disabling in 2005. I have the many, many tests and treatments. I have never even

heard of emg/nca test. I would suggest that you do some research on your own about

the test. You might also ask one of your doctors to provide some written info about the

test and what it would accomplish. Sorry you are going through this.

pigg

6/ 5/08 12:42pm

I have been going to the same pain specialist for the past five years now. Nothings takes the pain away. I survive off of muscle relaxants and pain medication. Nothing else I had had worked. The last resort is to have a spinal fusion. That is no guarantee by the orthopaedic surgeon that the pain will get better or go away permanently. I wish for it t go away permanently. I am disabled because of the injuries and surgeries x2.

I have found out that the best thing is prayer. The pain subsides for awhile. I just live with the outcome and hope that one day there will be an intervention that helps us all.

dre

6/ 5/08 12:53pm

I have just a second but felt that I needed to respond . It really looks like this dr is taking your complaints and is doing all the right tests to get you some real answers . Yes they are painful but they will give you some reall answers and might give the drs the right to give you even more pain meds to trreat what you have . Most dr will not give a person the heavy hitters without some proof to back them up with the dea . The dea has their hands in things like you have . If the find the damage that they must think you have it will allow you some to help with the pain . It is so hard not to be blinded if we do not know how the system works . It is too bad that most of the real telling tests come with pain . I know that I would like to do with out painful test my self . Some times they willo allow you something to calm your nerves for the emg if you are concerned . They will have meds in the hospital for pain after the discogram and usually a valium before the test . The trick with this test is if it does really hurt than there is a whole of damage . I have to go but sure do hope you give some thought to the painful tests and share your concerns with your dr . he may rx you some extra pain meds .......

Best wishe

Lisa

6/ 5/08 1:35pm

Hi Andrea,

I had a dr. tell me a long time ago that if you and your dr. know that you have a chronic pain condition you don't have to put yourself through any tests that are only to dx.

Have you thought about a spinal cord stimulator for your pain? My dr. told me i was to young 46 to be on a morphine pump for my chronic pain. I am lucky my stimulator is a god send if i did not have it i would not be able to move. Also the dr. put the leads high up in my neck so to cover all the nerve endings below that point. Twice a year i get lidocaine infusion therapy for my migraines, all they do it start a iv stick and inject the medication there it takes all of 30 start to finish. my last injection was november 2007 and i have been migraine free since.

Also have you tried the fentenayl patch?

miss lisa

have a pain free day.

Lisa

6/ 5/08 1:41pm

Andrea,

Also before your dr. puts you through painful tests. i would say to him look your test is going to cause me extra pain please provide me with the proper meds not just pain meds. valium, whatever to make sure i am as comfortable as can be. you don't need anymore extra pain sweetie and you have the right to ask for this.

If it is extra pain meds, a muscle relaxer, of something just to calm you nerves to relax you is well worth the aftermath.

Just a thought.

lisa

cyberchar

6/ 5/08 4:58pm

EMGs are actually not painful at all. I was surprised at how painless the whole procedure was. They also can tell the doctor exactly which muscles, discs, etc are involved which can result in medications or some type of micro surgery that can really help you to feel better. It's pretty hard for any doctor to accurately diagnose the problem without some type of help, either with an EMG or a facet joint surgery done under a floroscope so he can see exactly what's taking place.

I have degenerative disc disease which has now developed into scoliosis, bone spurs, pinched nerves, you name it. Then on top of that I have rheumatoid arthritis which has now gone into my pelvis-an odd place for rheumatoid arthritis -in an unmoveable joint. Many years ago I had those pressure point injections from my neck to the base of my spine--now that HURT! And the injections did nothing at all.

It is so very depressing to go to doctor after doctor with no relief, isn't it? I just got my Medicare statement from the facet joint injection surgeries. The pain doc charged over $6,000 for a 30 minute procedure which lasted about one year. And that was for just one side.

I really wish you the best of luck. I wanted a morphine pump so badly but my liver and kidneys are slowly failing and no one can figure out a proper dosage when sometimes the morphine stays in my system for too long and I go "toxic". Last time I ended up with an injection of Narcan and a morphine overdose so I'll just stick with my methodone and 15 mg morphine tablets for breakthrough pain along with my fentanyl patch.

It's a heck of a way to live, isn't it? But it's still a lot better than dying!!

Good luck! Char

Helencal

6/ 6/08 12:00am

Cyberchar,

Good Entry. I am sorry for all of your pain. The pelvis does have moveable joints...in particular the sacro-iliac joint. These joints must move or women could never have babies!! That's why a good doctor or masseuse can put a sacro-iliac joint back in place to relieve some types of sciatic pain.

I worked as a Master's Degree Nurse Practitioner with a large group of Boston-trained neurologists and neurosurgeons. Unfortunately, that never helped me with my fibromyalgia.

I have great empathy for everyone on this site, but I do think that we all need to learn much more about our diseases and syndromes ourselves.

cyberchar

6/ 6/08 9:10am

Helencal, I really appreciate your taking the time to post. I guess male doctors just don't take having a baby into consideration when they make those kind of statements. Gee, if it wouldn't expand, all babies would be long and skinny I guess, huh? Or any woman who had a baby would be going around with a broken pelvis. Makes sense to me.

So sorry about your fibromyalgia. I know how grateful I was when I finally got diagnosed with my rheumatoid arthritis so I knew I wasn't loosing my mind. Yet I still read so many articles that fibromyalgia is a "syndrome" and not actually a disease. Obviously again, those are written by someone who has never experienced it in person. My neighbor in the high rise where I live for the elderly & disabled talked about hers all the time. Because she was bipolar and paranoid, I admit that I thought she was making up some of her symptoms. Thankfully I never told her. Sadly her doctor thought she just had mental problems and overlooked all the lumps she would tell him about.

At the end, those lumps proved to all be cancerous and she died a month later, but not before making certain all her family would have Christmas gifts from her after she passed away. A wonderful woman taken at 47 because her doctor just increased her psych meds instead of investigating what those "lumps" really were!

We have a hospital here in my hometown that could really use a qualified and caring nurse. Want me to send you an application? LOL. The last time I was hospitalized and vomiting repeatedly from a Narcan injection (they overdosed me with morphine, no one bothered to check my file about pre-existing conditions), the RN walked in and said, "If I give you this pill will you keep it down?" When I tearfully said I didn't know, she took it and left. She also refused to let any of the CNAs bring me a clean gown. See, I told you we needed you here!!

Take care. I hope the humidity that is all over this time of year isn't causing you too much more pain.

Char

cyberchar

6/ 6/08 9:25am

Please forgive me repeating myself. I can't find how to edit my last post. Although it's been a year, that whole incident with the morphine & Narcan is as clear as if it happened yesterday. I promise to be more careful not to repeat myself!! Sorry...If someone could tell me how to edit posted material, I'd be eternally grateful!

Too many pain meds, I guess........Char

Terry

6/ 5/08 5:33pm

IN, my opinion, a morphine pump should be used as a last resort. I have one. I have had a discogram, it's painful, but helped find the cause of my problem when all other tests failed. The shock test, if it is like the one I had, it's not painful, just uncomfortable at times. I have had so many tests over the last 20 years. And back surgeries. I wish you the best. Good luck. write me if you need to talk' Terry

Helencal

6/ 5/08 11:51pm

If you don't understand a test, ask your doctor or look it up on the Internet. Be more aware of taking care of yourself. The EMG is electromyelography and the whole testing determines how your muscles and nerves are functioning. The test feels kind of strange, but really isn't that painful. I know pain because I have had fibromyalgia for over forty years.

I realize that we are here to support each other, and I do feel very badly for you having unsympathetic doctors, but it is rare to find a truly sympathetic doctor. So it is up to each person to care for himself with medical help. I know about nursing care, but doctors unfortunately are very bad at it.

But then there are headline stories such as today where an NFL football player paid $3900 for one hundred 10mg oxycontin. It sucks!!!!! People in true chronic pain DO NOT abuse their pain medications!! But some doctors aren't tough enough to prescribe true pain relief for their patients.

Diana

6/ 8/08 2:10pm

Hi all, I've had @ 3 or more nerve conduction studies down the entire lengh of my left arm & I found it to be more of an unusal sensation rather than painful; needles are inserted just enough to pick-up a signal (shows up on a graph like an ekg only it's neurological function to skeletal muscle.) when I compare these things to dental work (emgs, epidurals etc...) they feel like nothing much in comparison. I only know 1 person who has had a discogram; he described it as painful but he also had an extremely high tolerance for pain medication & had trouble with pain management for any procedure. Everyone has a different tolerance but I think it adds unnessary anxiety to tell anyone who is up for a procedure how painful it is when it isn't necessarily so for everyone (this reminds me of women who share horror stories of their 25 hours of labor with pregnant women, they have enough to worry about w/out .) So, my experience with nerve conduction studies is unremarkable. I hope yours is as well. Nurse Diana

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