Help Me, Please!!!

[Debbie71]

I have posted a couple of times on different threads about pain, however, after my visit with my PM doc today, I don't know where to turn. To give a little history...I had a fusion at L5-S1 back in 2004. I had good benefits from it until the middle of 2007. I was also diagnosed with fibromyalgia in 2007. I have gained about 75 pounds since the back surgery because I am unable to exercise without pain. Back in October of 2007, my husband and I went to the state fair and walked around for about 2 hours. The next day, I couldn't get out of the bed. I went to see an ortho about 4 days later. He took me out of work for 4 weeks. After 4 weeks, still no better. He then sent me to PM for LESI. Still no relief. Needless to say, I have been out of work since the middle of October. PM prescribed Neurontin and Ultram ER. Also, I have become immune to Darvocet, Vicodin and Lortab. I did go to PT 3 times and could not do it without severe pain. I called the PM doc back about 3 weeks ago and told them I needed something else done. He had previously mentioned doing the spinal cord stimulator. Well, I had a visit with him today and I have gained 8 pounds since November. He proceeded to tell me that because of that reason, he would not do the stimulator. (By the way...my MRI doesn't show any other disc issues. Just scar tissue around the hardware in my back and DDD.) He told me I need to lose weight and is sending me to a different pain management clinic to get me off of narcotics and help me find excercises I can do. I am hurting so bad right now I can't hardly stand it. I just feel like the docs don't believe me or think that all I want is drugs. I explained to the ortho last week that I can not continue to take narcotics and become addicted because my ex husband would take my child away from me. I don't want to be a druggie! I just want to be pain free!!! I am at rock bottom and actually started thinking about what it would be like to just go ahead and end it all just to be pain free. I just took 2 lortabs, 2 neurontin, 1 flexoril, 1 xanax and I am still wide awake. Yet, I still hurt. SOMEBODY, ANYBODY, PLEASE HELP ME!!!!

[Nev57]

I have a Medtronics Neuro stimulator implanted on the dura of my neck for pain control. I still need to take pain meds but the amount is much less. Jerry Lewis has the same Medtronics stimulator. You could do a google search for Jerry lewis and Medtronics for his story.
I wish you luck on your search. Hang in there!

[Peter B]

Deb,
I have no words of wisdom for you, just my hope that your situation improves. I know how mentally taxing it is to have unrelieved pain. I don't understand why they want to take you off of your meds. If anything, they should be looking to switch you over to a long-acting med. like MScontin or Oxycontin or whatever.
Doctors baffle me sometimes.

My positive thoughts are going your way,
Pete

[Debbie71]

Thanks for the positive wishes above. Here it is 12:30am and I tried to go to bed...on my heating pad, of course, and I am still in extreme pain. Usually the pain is in my lower back and right leg, but for some reason since about 5pm yesterday, I have been hurting in my lower back and left leg. On a 1-10 pain scale, I am at a 10 at this moment. However, I can't take anymore meds for another 2 hours. I need relief! I am desperate! As I sit here in tears, my husband and child are fast asleep...where I want to be.

[A.K.]

First of all please know that you have my heart felt sympathy in these situations. We have alot of similarities in our stories except that I have been out of work since July 2004. I understand 100% about the distress over the pain and also gaining weightdue to lack of excercise.

If it is a financial possibility for you I would like to encourage you to try Nutrisystem. I lost 50lbs. on it in three months and that was with zero excercise. The weight loss did not help my pain any as I had hoped but if it would get you the stimulator it would certainly be worth it and perhaps your doctor would do it in just 6 weeks or so if he saw you dropping weight as fast as you can with NS. The best thing was I honestly did not go hungry on that diet.

You know what is up with these pain meds not doing anything for our pain? I am like you. I can take my meds all together or spaced out......no relief. I am going to go back to my primary care next week and discuss this issue with him. I am not currently with a pain management doctor (long story) has mostly to do with my insurance. I have got to have some relief. I too am at my wit's end. I need help, I just can't keep goin like this. I understand completely, you are not alone and I am so, so sorry. Angela

[GardeniaGirl]

Sorry you have so much excrutiating pain right now - I know from my own personal experience that it can be very difficult to get decent control of pain- even with meds and good doctors, etc.

For short-term solutions, what I do if I simply cannot get relief is I try to find a physical position that causes the least amount of pain, and then just try to close my eyes and do deep breathing to calm myself down.

This seems to be the only way to get through the truly intense episodes of pain - when I've taken all my meds, cannot sleep, have used heat and ice, etc.... I just let the pain wash over me in waves.

I have practiced meditation for many years, so when I am doing the deep breathing, I just try to focus on the breath....this shifts my attention off the pain. That seems to help take the edge off just slightly.

This is not a "solution" per se, as much as just a way of getting through a pain crisis in the middle of the night.

I know some people go to the ER for severe pain episodes - I personally have not done that, but it could be another option.

Hope you can get some relief soon-- GG

[Mark N]

Debbie, sorry I didn't see this yesterday. I am sorry you are having so much pain. You need to research and find as much info as you can because you are not immune to the meds but your body needs higher doses to receive pain relief. You will not become "addicted" unless you have an addictive personality otherwise you will only become dependent. In other words your body needs the meds but you aren't taking the meds for the pleasure, "high", you get from your meds.

You need to find a PM that uses a whole range of approaches to pain control. It sounds as if your current PM is pushing SCS which has some problems of its own. Some PMs push injections as the answer while others use chiropractic manipulation and other PMs will use a variety of methods including narcotics to manage pain. Just because you need pain meds now doesn't mean you need them forever even though some of us do need them for the rest of our lives. That doesn't make you an addict any more than using crutches as a broken leg heals makes you crippled. Find a PM that cares about your pain and finding a way to relieve it.

Remember if you want to lose the weight there are two components to weight loss; your diet and exercise. If you can't exercise then you can lose weight by controlling what you eat and drink although your progress will be slower than if you could exercise.

[houghchrst]

Debbie, I am so sorry you are going through this. I too am in the position of needing to lose weight yet being in so much pain that exercise is virtually impossible. Swimming is wonderful for pain and to help lose weight. I cannot afford to join a gym for that right now but if you can then you may want to look into it. Maybe insurance will even cover it under physical therapy.

I do have an addictive nature and though I have been clean and sober and have managed to quit smoking my addiction now is food and having a mental illness only compounds it. I really don't see myself becoming addicted to pills (was not my drug of choice, didn't even like taking them then) but as Mark says more dependent. I don't like the thought of it but the alternative is unthinkable. Do you see anyone in the mental health community? Maybe treating depression will help you lose weight also as that can often be the base reason, among other things for over eating. I don't so much over eat all the time but when and what I eat is the problem. No food usually until anywhere from 1-5p.m. and then high fat, high calorie food. Chocolate and pop too often. There is a DVD from the National Arthritis Association that has basic yoga on it for everyone from perfectly healthy to wheelchair bound. Wonderful and may help to give you a start. You can do as much as you can manage.

I hope you also can find a PM that will help you. I went through two that only wanted to do injections and now I am waiting on my third. Yes I hurt all the time and cry at least once a day because I am sick of living like this but we have a lot to live for and there will be days when we get a bit of relief. We just hang in there and go moment by moment.

[Debbie71]

Thank you so much to all of you who have posted. I did end up going to the ER this morning about 1:00am. The pain became so intense, I was crying hysterically. When we got to the ER, there was a 3 hour wait. I couldn't sit, stand, walk or lay down without pain. I actually made a fool of myself at one time. I put my jacket on the floor and kneeled down on it and was hanging over the seat of a chair trying to get some kind of relief. All of a sudden the pain struck me twice as bad. I started crying hysterically again and yelling for God to help me, somebody help me. I just couldn't hold it together. When I was called back to be seen. The doctor said, "You probably have a pinched nerve. We will give you a shot and send you on your way." The nurse came in and gave me decadron, Daladid and Phenergan. I NEVER felt the effects of the medicines. My body as become so dependant on drugs now that I can't even tell when I take them. The only Rx he wrote for me was for a steroid dose pak. I don't need steroids, I need something stronger for pain, and nobody will give me anything. I just can't explain the pain I was in. I am not a drug seeker...I am a relief seeker!!! I work (or did work...I am sure I will be let go soon since I have been out since October) in a doctors office and I know how the docs and nurses talk about patients that come in wanting pain meds. Now, I am one of those patients.
Thank you again to all of you who have posted. It really boosts my spirit when I read your well wishes.

Debbie

[sandi1016]

Deb,
When the pain is flaring, try to alternate ice/gel packs and heat. Don't ever lay on a heating pad and fall asleep with it on, you can get serious burns. Also , try some of the over the counter heat wraps. Those work rather well for some people.
The steroid pack might help to reduce the inflammation at the nerves if that is what is causing your pain.
Sometimes a simple NSAID will help to reduce the pain levels as well, as the narcotic pain medications.
I don't know if there is such a thing as pain free when we are dealing with chronic pain, but rather to bring it down to a tolerable level instead is the goal.
Do you have a TENS unit? If you do, those give good pain relief as well to some people. Sometimes pain medication is not the answer. Have you tried to take a hot shower or bath to help ease the pain?
Sandi

[debhun]

Debbie I would go with what Mark and the other have said here. What they gave you at the ER was some strong stuff. I have found out if I get my mine away from my pain I can deal with it. I have 7-10 pain around the clock. It is under my right breast and goes though to my back at times. I don't have a galblader and my liver is fine. But there is something what I don't know cause I don't have Ins to pay for the test that needs to be done. I am on Methadone and it does take it down to a 7 but it will run back up to a 8-9 or 10 pain. I use a tens on it and hot and cold hot bath with my jets. But like I said useing my mine to get it off my pain helps alot. I am so sorry you are hurtting so bad. People here have gave you some good help. I would try and play some games on the net or read a book to your child. Just any thing to get you mine off of it. I know you are in pain but you have to try. I hope you will get it undercontrol soon.

Deb*cg18

[Diandra]

Hi Debbie,
How awful you were in that kind of pain and they made you wait 3 hours at the ER, that is barbaric.

I have to agree with Peter...if you have not tried it, you might try a higher dose of a long acting med like oxycontin or mscontin, etc.
One time when I popped a disk in my neck and was trying not to go to the ER in the middle of the night, I was also crying in pain and ended up taking some old Elavil I had hanging around that the doc had given me for pain control but I couldn't stay on it because it made me too sleepy. I basically knocked myself out with Elavil and it gave me only a couple of hours of sleep/relief. Just thought I'd mention it because as someone said, sometimes narcotics just don't work for some folks and you have to try other things.

The only other thing I can think of that I have tried is Botox injections. The first time I did them they worked like a miracle but, the second time there was no effect. However, the first set of injections gave me 3 months of relief so they are worth trying.

After they gave you the Dilaudid and decadron, etc and it did nothing, did you tell them it did nothing and they gave you more or what did they do? Did they send you on your way without relieving your pain?
I feel so bad for what you are going through....I know how embarassing it is to be crying in pain and you feel like an over dramatic fool but there is nothing you can do because it hurts so bad.

Hang in there, Diandra

[911]

Awww deb i so feeel for you early on back in the mid 80's when i started having problems show up due to my psoriatic arthritis the docs all told me they didnt beleive i needed pain meds and it was in myt head , i beleived them for a while but it kept going on till it drove me crazy ,literaly and i ended up in a psych unit for the first time and they also treated me as a drug addict and i got off the meds but still had pain , i had come close to comitting suicide so many times over this untill i finally found a doc who was willing to listen to me and actually beleived me , when this happened i creid in this docs office coz someone finally heard me and beleived me and didnt treat me asa drug addict , well pain medicine has come a long way since then , i am so sorry to hear there are doctors seemingly still stuck in a time where the old beleifs pervail . i do feel for you as i came exstreamly close to killing myself so i really wish you the best and i hope you will find the help you need i did with time ,,,,,,,, my thoughts are with you and if you need to get to me you can PM me thru here and i'd be happy to chat with you ,,,,,,,,,,, Dave ,,,,,,,aka,,,,,,,,,,,,,,,911

[Debbie71]

Thanks for the suggestions, Sandi...I have tried alternating the ice and heat packs with no relief. I know about the burns from the heating pad. I have had 2nd degree burns on my back several times. I guess you could say I am addicted to sleeping with my heating pad. I just feel I can't sleep without it. And when it turns off in the middle of the night, I wake up and turn it back on. As far as the NSAIDS go, I can't take those because I have severe GERD with esophagus erosion. I have used a TENS unit in the past which belonged to my father, but I haven't been prescribed one myself. I do often take long hot baths or showers and it does seem to help at first then it's back to the same old pain. I just ordered a treadmill online and I am determined to lose the weight one way or another. I will walk on the treadmill for as long as I can even if it does cause severe pain. Every doc I seem to visit says my weight has a lot to do with my pain...so we will see!

[gizmogirl]

You really have to re-read what Mark said and take the actions he suggested. Stop worrying about being addictive or considered drug seeking or incompetent as a mother. Stop wasting your time thinking about these things. Worrying about these things to docs makes you sound like pain relief is not your top priority.
Assume that you deserve to be out of pain and kindly but firmly keep going to ER's, calling and going to docs, and limiting the conversation to symptoms and getting relief until you are taken seriously. What do you mean that the hydromorhone had no effect? Do you know what dose you got in the ER so you can tell them and/or your doctor that it wasn't strong enough? If not, find out.
Don't be against taking steroids or other drugs that might help diagnose what the problem is, or get at the root of the problem; just make it clear that you are willing to take anti-inflammatories, anti-depressants, anti-anxiety, anti-allergenic, anti-whatever, so long as they understand that what you need most is immediate pain killer relief.
That is your goal, right? Immediate pain killer relief, at least until the pain is diagnosed, since you seem to be saying that this is separate from the fibromyalgia, right? Where, for example, does it hurt worst? You are talking about everything from philosophy to it being a number 10, but are you keeping notes on your calendar of when you're feeling like a 10 and what's going on with your body? Just a few letters by the date, (in like the) PM (your) B(ack) (was a) 6 or whatever.
Mark is right that no one should rush into getting a stimulator without trying alternatives and having a pretty good diagnosis.
It sounds like you have 4 important, straightforward goals.
1. Get pain relief.
2. Get some weight loss going (eat bags of frozen veggies and a little fresh fruit and salads with 2 calorie dressings and you won't have space to eat anything that gains you weight!)
3. Get a decent amount of sleep (pain killing and fibromyalgia knockdown)
4. Get a diagnosis and treatment going.
If you work on all of these goals, just chipping away at them, they will tend to work on each other for you.
Good luck,
Jane

[Lil E]

Gizmo is correct. You have to jump through the hoops. You're in a bad area to find a Pain Management doc. Try www.spine-dr.com they might be able to help you find a doctor near you. For the type of pain you are describing narcotics are usually the only answer. Most docs won't do stimulators without having tried meds first.

Also you're confusing addiction with dependence. Addiction is taking more meds than you are prescribed to get high. Dependence is your body gets used to having meds to function. If narcotics are properly prescribed and you take them as prescibed it can't be used against you for custody issues.
I know its hard but try not to freak out and keep track of your pain. Can't the doc you worked for help you? If not start calling out of the yellow pages or if you go to the ER again ask them if they know a doctor you can see.
It took me 2 years to find mine. Its a hard condition to get treated.

[moose53]

((((((Debbie)))))),

I'm sorry that you're suffering so horribly. It's an obscenity that we're pimping weapons all over the world and there are so many people with chronic pain who just get kicked to the curb after the "standard" treatments. Well, off my soapbox.

I ended up in a psychiatric hospital after a suicide attempt about 30 years ago because I couldn't get any pain relief for an injured back after a subway accident and the 'treatments' were making everything 10 times worse. Thanks be to G-d, I spent just over a year in that pain and it corrected itself.

Have they done radio frequency lesioning on you?? What do they say is causing the pain??

A couple of things that you might want to check out are:

* clinical trials for chronic pain -- I've got some bookmarks regarding clinical trials: http://public.murl.com/moose53/HEALTH_AND_MEDICAL/RESEARCH_(MEDICAL)/CLINICAL_TRIALS (press the [page-down] key 4 times to get to the appropriate section)

* also you might want to get in touch with some local places that teach relaxation and biofeedback to cancer patients. It sounds like you might have slipped over into a panic attack in the emergency room -- absolutely understandable. When you see no relief EVER, you reach a limit -- I understand that. These techniques DO work. They teach you how to gain more control over your body so that you have some resources to fall back on in an emergency.

Sadly, you've run into the brick wall that MOST people with chronic pain run into when they go to "pain management" (AKA "needle jockeys"). They make a huge amount of money on the needles and on the expensive testing. They know you won't be cured. The technology hasn't progressed as far as it should have because of the stifling done to medical research by the current occupant of the White House.

Also, look into Reikki and/or Therapeutic Touch. They work fantastically for relaxation. But, there's newer research that's finding that they also work well for cancer patients and chronic pain patients.

It's sad that they'll give you a "major" drug if you've had a tooth pulled or if you've had your gall bladder removed, yet, they just don't GET that chronic, constant pain is horrible not just because of the pain (which is bad enough) but also because it drains your mental and physical abilities and resources for coping.

I hope you find a solution that gives you some long-lasting relief.

Hugs.

Barb

[Mark N]

Barb, it is amazing how a quadrupling of medical research by the federal gov't is stifling advancements in medicine.

Debbie, I hope that you do get some immediate pain relief. It is a good thing to lose the weight but you don't need to suffer in the meantime. In fact, good pain control will help you exercise more. I hope your efforts to exercise doesn't increase your pain and you are able to work to get your weight down.

[Debbie71]

First off, I want to say Thank you again to all of you who are listening to my complaints and giving me your heartfelt sympathy and wonderful suggestions...With that being said...I ended up in the ER again yesterday. When I got to the ER, they could see how much pain I was in. They took me straight back to a room. I could barely stand up to get from the wheelchair to the bed. Once in the bed, all I could do is cry and pray. The doc finally came in and asked what was going on, I gave him the run down of everything and begged for his help. He then had a nurse come in and start an IV. To start, they gave me 2 mg of dilaudid. That brought my pain level from a 10 to about an 8. Then I started having chest pains and became nauseated. The nurse then came in and gave me 25 mg of phenergan. I was comfortable for about 20 minutes, and then the pain started up again. I was then given another miligram of dilaudid and some solu medrol. At this point I was able to relax and the pain level went down to about a 4. This time I was sent home with a Rx for percocet # 16...unlike the ER visit 3 days prior when they just shot me in my hip with dilaudid and sent me on my way. When I complained to them that I did not get any relief from the shot, the nurse said, " It takes a while for it to work...just go on home and you will be fine. Basically "get out of this bed, so we can fill it with someone else in the lobby." I was so thankful to everyone there just for believing that I was in pain and not "seeking" this time.
Lil E...thanks for explaining the difference between addiction and dependance. It is kind of hard to understand the difference until it is explained. I know I am dependant on the drugs...hince having to get 3 miligrams of dilaudid.
Now all I have to do is wait for the pain management clinic to call and set up my appointments. For those of you who have been to PM, what do they usually do? Will they d/c all of my meds? I am a little in the dark about what will happen with them.
Again...THANKS to all of you for you kind words...and hopefully one day, we can all be pain free.

[gizmogirl]

Please don't forget you can increase the bang for your buck-worth of effort if you work on all four goals I summarized for you from your posting. And, for the weight loss, I'm serious, don't sacrifice. Eat a much greater volume of food than before. A bag of frozen veggies is about as much calories as a cookie. I mix fat free sour cream and lemon juice (& maybe some horseradish powder), then add almost a pound of grated carrots and a finely sliced cabbage. Makes an extra large salad bowl of creamy coleslaw that my hubby eats in 2+ days. But it's got zip for calories and he's lost 70 pounds by eating more food than ever with my ultra low cal veggie dishes. I say substitution, not sacrifice!
Good luck,
Jane

[Debbie71]

Ok, here we go again...I was awaiting a call from the neurosurgeon's office to let me know when I could go see the PM clinic docs to get me some relief without so many narcotics. Well, I received the call from the nurse and she told me that they had faxed my notes to the PM center and they received a call from them stating that there is nothing they can do for me. I asked her what she meant by that. She said, they just said you need to go back to see your primary care doc. I was totally in shock. I told her...isn't that what PM clinics do...they help people such as myself who is in pain everyday and who has become dependant on narcotics. She said, "I don't know what else to tell you other than call your PCP and make an appt." I then told her that I needed to get my records from their office. She said, "You will need to come in and sign a release...I then snapped back to her, no, my husband will come in and sign becuase he is going to be planning a funeral. I know now that was silly for me to say, but I was not a happy camper. I started thinking after my conversation that what she had told me just did not sound right. So...I called the PM clinic and spoke to someone there and explained who I was and why I was calling. The person I spoke with knew who I was because she said she had just spoken with the neuro's office to let them know what to tell me. I asked her if it was true that they said there was nothing they could do for me. She said, "No, our doctor here reviewed your chart and had me call the neuro docs back to let them know that you need a spinal cord stimulator. I asked her if she was serious. I told her that they had called me and said that there was nothing that could be done. She assured me that someone was lieing to me. Can you believe this crap??? She said we told the neuro that they would have to place the stimulator because we don't do those here. I have called the neuro office back and left a message for them to call me back to try to get to the bottom of this. Why would they lie to me? I have been out of work since October and have been getting nothing but a run around from the people that I know can help me. I am at wits end...All I want is HELP!!!

[Kandra]

Hi Debbie,

I feel for you...it's very frustrating to be in such pain and not seeming to find relief! I think the reason the meds in the ER didn't help you was because your pain was so far "gone". Dilaudid is actually a very strong pain reliever...so if that didn't help, it tells me that indeed your pain needed to start being controlled when it was at a lower level.

Have you ever tried LidoDerm patches? They help some people...

I have gained ALOT of weight due to steroids, yet my PM doesn't base my pain meds on the fact that I should be losing weight. Maybe an option is to find a different PM doc...one who will get your pain under control, then talk to you about the other issues. I agree with Mark in finding a PM who uses a multi-disciplinary approach. After all, you're not going to exercise if the pain levels are too high. There ARE chair exercises though that you could do.

One last thing..as others have mentioned you will not become an ADDICT unless you take the pain meds to get high. If you take them for PAIN, that's the appropriate use. In either case your body will become dependent, but then again the body becomes dependent on anti-depressants and other meds.

Good luck!

Kandra

[cindybear]

One thing I didn't see posted that may also help in the long run is a pain journal...start one today and state what works to help your pain,,what makes it worse,,you can googgle pain journal to see which one might due you better, but this is what helped me in the long run..but it surely sounds to me that you need some long acting narcotics for the pain you desribe. you are stuck in a ruck,,,and need a compassionate pain doc..i would take those steroids,,they help my husband,,and he needs a 3 level fusion for the past 8 years (which he refuses to have, the outcome does not promise to help the pain at all ) So why go through all that and it not help, plus they say he has 20% chance of becoming paralyzed. So we both don't like that, I had a 10 % chance of having a stroke during my stent procedure and guess what...yes, I had a stroke, So I do not take those % lightly..and no one should,,Hugs, Cindy

[Digikitty]

wow Debbie, i really know how you feel, I am going thru the same exact THING with my Drs. tho I am ok witht the Vicodin,I rather have something else, but soo afraid of looking like a "drug seeker" like you said.In a yr and a half, I have had 4 scripts of (3) 20's and one 30 of Hydrocodone..Im a real doozy huh?
I have used everything..2 mths of PT, tens unit, ice pack, heat pack, steroids, Ultram, injections..
I also worked in the health field, I was a hospice nurse....