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Posted 12/20/2010 10:45 AM (GMT 0)
I am so frustrated! I see all of these people on here getting the pain meds they need and I get the speech about learning to deal with the pain with diet and exercise. Right cause I didn't try that first before I went to a doctor! Right now I am on Vicodin and Robaxin. I get four Vicodin a day (5mg) and 6 Robaxin. I have fibromyalgia and osteoarthritis (I just found out that my spine is deteriorating). I had the spinal cortisone shots (bad side effects and a little relief- one shot left to get). But I have severe pain. I have been on the Vicodin for almost two years with no increase in my dosage or frequency (actually before I was dx'd with fibro and they couldn't figure out where the pain was coming from I was prescribed more Vicodin- so they have actually reduced my dose). I have seen a pain management doctor who didn't believe in narcotics or opiates anything strong. he gave me Tramadol and Robaxin. And he had me try every preventative from Zoloft to Topamax (everything in between!). Now I just want pain relief. I even went to Rush - Copley ( a teaching hospital in Chicago) the doctor made me wait 2 hours (he was 2 hours late for my appt) and then refused to listen to me, prescribed another anti-depressant and in ten minutes the meeting was over. I take my mom with me to appts because some of the doctors I have seen were such jackasses I needed an advocate (when I am frustrated I cry- a lot and that wasn't going to help me. So when it looks as if I am reaching that point Mom steps in on my behalf). The doctor told me to try the anti-depressant. I told him I had tried 5 different anti-depressants and was not interested in trying another. He then told me to come back when I wasn't "so paranoid"! He then walked out of the room- appt over. So I drove 4 hours both ways and waited another two to be called paranoid after a 10 minute consult. I have seen a total of 6 doctors in 2 years and I can't seem to get the pain meds I need. I am two hours out of Chicago and an hour out of Peoria, IL. I don't know what to do- I am at the end of my rope. The Vicodin doesn't work as well as it used to, but the doctor won't give me anymore or any stronger. The other drugs I see other people on I can't seem to find a doctor to prescribe. What do I do???? Any and all advice would be appreciated!
Posted 12/20/2010 12:57 PM (GMT 0)
So sorry you are in pain, Sad. It's not fun waiting 2 hours when you're hurting. But do understand that's not unusual for Rheumatologists. I once waited 3 for mine. I hope you are seeing a rheumy! They are the best with fibro, although some pain docs know a bit about it. It seems teaching hospital clinics make you wait longest and then you see the doc for 2 minutes because they have way too many patients scheduled. Rheumatologists in smaller hospitals may be a little less overworked. There are very few rheumatologists because they have to take 2 residencies and the field pays very little.

I found it helps to have a list of meds I have tried and their effects typed up. I've tried so many meds I forget which did what.

I also have my medical history typed up chronoligically for the first visit.

For my fibro I've only had good relief from tramadol. But don't take it at bedtime or in the night. It gives me insomnia then! I get to sleep with Ambien. The instant release generic only lasts 4 hours or so, and then I sometimes need another or a diazepam.

Vicodin doesn't help much with fibro muscle pain after a couple of months. It's good for post-operative or bone pain though. Muscle relaxants don't help my fibro, but diazepam (works as good muscle relaxant) does help with my back muscle spasms - when I have to sit in a straight chair or have done too much lifting. I got no fibro pain help with antidepressants, neurontin, Lyrica, Cymbalta, or Savella - just side effects.

I'm still looking for a pain reliever for the middle of the night when the fibro gets bad. Can't take codeine or fentanyl because they give me vomiting.

For my bursitis and tendonitis I'm taking Advil. 3 at a time works. Yes, it's too much, but Mobic, flexeril, Robaxin, etc just don't work for that.

I'm looking for another rheumatologist since my good one is very ill and his staff keep pushing my appointments ahead. I haven't been able to see him for a year and a half. My pain doc has been working with me all this time.

Pain docs are pretty good for testing to help you find out if you have pain from spine or bursitis or tendonitis or arthritis. Mine has had me get MRIs of my whole spine and recently, my shoulder. He doesn't inject shoulders, but has done my lumbar spine, which helped for a long time with the sciatica.

Don't demand a specific med, because it makes you look like a drug seeker. Take your list and try everything the doc gives you. I've been looking for relief for 2 years, still trying. Probably no single med will do everything. Good luck!
Posted 12/21/2010 4:00 PM (GMT 0)
Hi Sad,
nice to see someone from the same area I grew up. I was located 1hour from Peoria IL. I now live in VA and I feel like my life is over. I worked for 20 years as an electrician. I helped build my sisters house. I believe I hurt my self and now have had chronic pain since November 2006. I have been put through the ringerto figure out whats hurting me so they just say its Nerve damage. I have a stimulator love it and all but helps 40%. I cant get much help either Pain Management sucks. I feel like Im at a dead end. I have found a Family Doc who has been with me this whole ride. She understands a listens. I would start there. I get no help other than the stimulator from Pain Management.
Posted 12/21/2010 5:18 PM (GMT 0)
Hi,
I don't know what pain meds you may need or qualify for, but generally I would say that in Chicago the worst place to go for pain is a teaching hospital. I did not get any treatment other than what you have had until I found a small private pain clinic out in the suburbs. Get your diagnosis from a teaching hospital, then head to a small pain clinic where the doctors have more than 7 minutes to listen to you and offer "comprehensive" treatment for pain that will include med management, injections and alternative therapies.
It probably will be hard to get much in the way of pain meds with your dx's around here -- even at a smaller clinic. I do have good pain control now, but it took me nearly a decade to get to this point.
To be honest, you're likely to keep getting that lecture about physical activity and/or weight loss wherever you go. It irritated the heck out of me as well, but once I finally agreed to try to do a little bit at a time, adding a bit more each month, that's when my PM agreed to give me a bit of a temporary increase in the pain meds. The reasoning some of the better ones will give is that pain meds carry with them a lot of health risks. So, the only reason why doctors are willing to put their patients in that kind of danger is if the alternative (i.e., sedentary lifestyle which increases risk of heart disease, circulatory issues, infections, etc.) is even worse. That is to say, long-term liver damage is preferable to an near-term risk of a blood clot or another acute disease.

Good luck! I hope you find some relief soon!
frances

Post Edited (Frances_2008) : 12/21/2010 10:31:07 AM (GMT-7)

Posted 12/21/2010 6:39 PM (GMT 0)
 

  Dear SST,

 

   First off *BIG hugg* I am so sorry you have been treated in such a careless manner. Next thing I really feel needs to be said... Don't wait that long to see anyone. Ever. You don't have that kind of time. Approach the front desk, ask to speak with administrator. Have your appointment re scheduled and your co pay put towards the next visit. You really do not need to wait that long to see anyone.  They are not equipped to have anyone in their office that long. Noone is serving lunch or coffee. Noone is making plans to reschedule the rest of your day. No one is taking your comfort and time into consideration. Don't be rude or angry. Just calmly state that you just don't have any more time to spare. Ask to be rescheduled. Make sure your co pay is put towards the next time you see him/her. I once had this same problem. I did have to approach the desk and tell the ladies I was sorry that their day was so hectic but that I had to get home to my children because they would be dismissed from school soon. They said they were very sorry for the delays. They then credited my co-pay to the next visit and worked me in the following day (which is strange because when ever I have tried to schedule an appointment I usually have to wait a month).

 

    As far as pain meds I just don't know what to say. My pain began 3 years ago. I was resistant every time I was approached with more meds. I stayed on the minimum dose possible that my doctors would let me get away with for a long time. I kept that up to 2009. Then it got to the point that I could barley walk and standing was so laborious that I was sweating after only 10min. My life was very difficult. I was progressing rapidly and by the time I got to my second primary deformity, I finally accepted more meds. It would end up taking many weeks to get to the dosage I am at now.

 

     I have never been lectured on weight loss. Just bothered about weight gain. When I wake more than 10 times per night I have to eat high protein meals 4 to 5 times per day.  I am not quite sure why that is, but my doctors seem to understand. I recently hit 130 (was - 110-105 for a few years) and for the first time ever, no one is bugging me about my weight. I am unsure if loosing weight is as bad a battle as gaining weight, but no matter what I said or did for 2 years I was bothered about it by all of my doctors. I think they meant well.. I really do. I was just sensitive and they weren't in my shoes, they didn't know how hard things were for me. Towards the beginning of this last year I would say "You see that? I gained 5 lbs. Small improvement". That way I didn't have to get the lecture. I am finally down to 3.5 meals per day. I think my doctors just wanted to know that I understood their concerns and I was trying to make improvements. It was just an up-hill battle.

 

     I really hope things can improve for you. I am so sorry you are being treated in such a careless manner. If there is anyway at all to get a second opinion I would pursue that. It must incredibly frustrating for you. I am so sorry you have to endure through so much pain. Hang in there and stay strong!

 

*warm hugg*
       dani

Posted 12/21/2010 7:31 PM (GMT 0)
Hi Sad, sorry to hear that you are having such a hard time and not getting much help. But, please know this is a very common problem for people that suffer with CP. It may appear to you here at the forum that everyone is getting what they need but that is far from the truth. In fact, it is getting harder and harder to find a good PM dr that will write a script if he think s the patient needs it. Most of us have gone thru several PM drs before finding a good one. With all of the hype about pain medication it just makes it that much harder for us.

There are two types of pain mgt drs, one does procedures and injections only and the other will do the same but will also write scripts for medications. So, if you are looking for a new one be sure to ask if the dr will write a script if he thinks one is necessary. A call to the new drs office can answer this question and maybe save you a lot of time.

Alcie and Frances gave you some really good tips on finding a new dr and things you can do ahead of time before your appt. with a new dr. Take care and keep us posted on how you are doing.
Posted 12/21/2010 9:13 PM (GMT 0)
Sure some people get lucky and find a good doctor who is willing to listen and work with them to manage their pain right away, but many people end up having to jump through all sorts of hoops before finding the right doctor and/or the right combo of medications that work for them.

If you have not tried medications such as Lyrica or Cymbalta for your fibro pain I suggest you do. While it doesn't work for everyone, for many people it does. My wife has taken both for her fibro and have has good luck with both of them. She first tried Cymbalta and her doctor screwed up and started her out at 60mg once a day and she ended up getting sick to her stomach and stopped taking it. Shortly after that she started seeing a new doctor and was talking to him about her fibro and Cymbalta came up and she told him the problems she had and he convinced her to try it again but starting out at 30mg once a day and then going to 60mg after a month and she didn't get sick from it and while the 30mg did nothing for her she got relief from the 60mg level. about a year later all those Lyrica commercials started and she decided to try that instead. Once again her doctor started her at the min dose and went up each month until she got relief. Most days she feels decent, but on the days she is having a major flair up nothing really helps her med wise, but she does think her meds do help shorten the flairs.

Anyway I think all of us here can understand your frustrations. Just keep searching until you find the right doctor for you.

Just out of curiosity how far are you from other IL cities like Springfield and Champaign. There are several of us who live in various parts of IL who may be able to steer you to a pain doctor or even a decent GP.
Posted 1/3/2011 9:14 AM (GMT 0)
You guys are so awesome! Just reading that so many people took the time to share their experiences and read mine meant so much to me! And the tip that Alcie gave me about typing up a doctor/medication "resume" was such a great idea (I have tried so many I too have trouble remembering!) I live in a town called Princeton in IL- so its about 2 hours from Champaign and 3-4 from Springfield. I just finished a set of spinal-epidural injections. They didn't help my back pain much, but they did help my leg and foot pain a lot. I got them through an new PM Dr. who seems to finally understand pain. He told me to get with him if I didn't feel relief from the last shot and we would talk. Then while I was waiting on the table for the shot to begin (humiliating with a male nurse there and the fact that they had to pull my pants down so far so the doctor could get the spot he needed) so while I was waiting there trying not to care that my bum was on display, the doctor had taken a call from another patient (the nurse said it was an emergency) he was so kind to whomever he was talking too. I heard him say "why don't I write you a prescription for Tylenol 3. It's a narcotic and it will help your pain." Of course I have no idea of the persons back story- but that fact that he didn't call narcotics the devils work (LOL) like most gave me hope. Of course when I first met him it was specifically for my arthritis and for the shots, so we haven't talked about my history or what I have tried (again thanks to Alcie- something so simple but such a great tool) so I will type up my history. It also just feels good to come here and be heard, I feel less alone. This month was especially tough because I had to apply for an Intermittent Leave of Absence at work. And even though they are allowed 5 days by law to get back to me they took 13 days. In between I had my shots and reacted not great with side effects so I missed 5 days and was worried that my bosses would hold me accountable for that time if the ILOA wasn't approved. I finally had to track the HR Mgr down and ask him via e-mail, and messages at the front door to call me before he left! I work for a really big retailer in a warehouse. He asked a bunch of questions that were accusatory under the guise of fact finding. Finally it was approved. But as you all know stress doesn't help the situation- so it was really nice to come here and see that so many people took the time to sit down and help me out here. So thank you all very much. These diseases really take their toll don't they?
Posted 1/3/2011 2:44 PM (GMT 0)
I too have found my best help with a pain doc. I had a good rheumatologist, but he's retiring because he's sick. He at least did a good job of diagnosis, although I planned on waiting 2 hours/visit. Pain doc only actually works on lumbar spine, but his associate, an anesthesiologist will do thoracic and neck shots. But pain doc sees a lof of fibro and prescribes one med after another to try to find one that helps.

But that's part of fibro too - trying one med after another. I tried several that seemed to help for a while, then pooped out or side effects settled in. All I have now is the tramadol which isn't long enough lasting, but the extended release didn't help enough and gave me side effects. The only other thing I have is Ambien to get me to sleep. I wake up in a lot of pain, but there's nothing to prevent it.

If you stay on Vicodin you'll have to increase dose because you'll develop tolerance. Tramadol, while a synthetic narcotic, doesn't seem (to me) to cause much tolerance. Tramadol increases seratonin, so watch out if taking anything else that does that. It's easy to get seratonin syndrome! (look it up)

I carry a credit card-size list of meds in my wallet. The other side has my list of allergies, brief history - heart attack, stents, fundoplication ... I printed it on bright yellow card stock. Keep the format in the computer for changes in meds. I printed sideways ALLERGIES, which sticks up so someone will see it if it's needed in emergency.
Posted 1/3/2011 6:15 PM (GMT 0)
SST-
Just fyi... if you have worked at least 1250 hours in the last 12 months at that job, they have to give you more than 5 days of unpaid leave at a time, in accordance with the FMLA. You are entitled to 12 weeks per year of unpaid FMLA time and that can be taken intermittently in any length of time deemed necessary by your treating physician. Yes, they do ask a ton of questions but they're entitled to do that in order to verify that you are spending your time totally disabled & seeking medical treatment. Your doctor should be able to provide them with a very basic note explaining that you are being treated for X and are under his continuous care, are totally disabled, and are unable to perform any of your regular work activities for Y period of time. Once you file that letter with your HR department, they are supposed to honor the request.

If you are receiving short or long-term disability, they are entitled to see your records & get a second opinion, at their expense, if they have reason to believe that your medical records do not seem to indicate a total disability (this is not very common but does happen sometimes). I know it is terribly stressful, but losing your job b/c you fail to answer their questions is worse. Your PM should be able to help you understand what questions you have to answer & which ones you are allowed to keep private. Hope you find some relief soon!

frances
Posted 1/3/2011 7:50 PM (GMT 0)
SadSickTired,

You've gotten some great advice from the others. As much as it looks like everyone here has their pain under control with medications and we get the med's we need, that's far from the case. Some of us do, but not all of us. We've all had to jump through hoops, wait in pain, visit many doctors, many ER's, and wait some more. I completely understand what it feels like to be in so much pain and not be listened to. I have been to many doctors who think that exercise and diet changes help all pain, which just shows they've never been in our situation. As frustrating as it is, and as much as you might want to cry,(I do that too, it's emotionally draining), staying collected and calm, as much as you can, really makes a big difference. Bringing an updated printout of your medical history, doctors you've visited, med's you've tried, etc. really helps the doctors know where to go from there. When you come in organized with all your info for them to see, they can see you're being proactive about your care. I hope you find a doctor that listens to you, and you get the relief you deserve very soon.
Posted 1/4/2011 12:58 AM (GMT 0)
My approx. 15 year experience: depends how old you are, the younger you are the more reluctant MD's are willing to start you on the pain mgnmt path; depends how many years you've been ill, how many hospitalizations, surgeries, medications, ER visits you've had, each experience gets you closer to MD's willing to give narcs a try. In my case I went threw YEARS of MD recommendations to try everything and anything but narcs: pain clinic management where I was expected to participate in everything they had to offer, acupuncture, biofeedback, therapy with chronic pain psychologist (who believes in cognitive positive thinking--don't get me started on what I believe about this one, especially when I'm writhing on the floor from pain. Then there was group support, etc, etc. I too was started on Vicoden, and now after I've "proven" that I really am in a lot of pain, I am well medicated, but it took approx. 10 yrs, several hospitalizations and several MD's, I was very proactive and asked a lot of RN's what MD was the best, understanding MD for chronic pain patients and I was luckily lead to who I see now--I have begged him to never move or retire.
So, it may look to you that some of us "have it easy" but in reality, a lot of us have had to take the long road to relief.

Warning: I feel I need to tell you that narcotics come with a lot of responsibility and personal strength; major double edge sword. There's the tolerance issue and what to do, go up up up or attempt to maintain, there's serious potential for addiction, personally, I was hospitalized approx four months ago and my pain meds were tripled b/c of the severity of the pain and now I am decreasing back to the prior level and I am seriously in a major depression, not to mention the physical withdrawl, and the pain is still present and I'm trying to cope but I don't want to be so heavily medicated that I'm just a zombie, which I have been for months. It's a tough life either way. My best to you and your journey.
Posted 8/13/2011 8:50 PM (GMT 0)
A prescription,how hard can it be for a doc.Whos better at giving a prescription a rhuematoidologist of pain doctor..I go to a pain doctor so far gabapentin don't help and robaxin..The only thin that helped was Soma..2 little pills a day..But they won't give em..Its like a miracle pill..I feel sorry for all these folks in pain..And the power that has been given the medical profession.XXXXXXXXXXXXXXXX



(Please read our forum rules before posting) Thanks! SEwink

2. No discussion of medical marijuana use.

Post Edited By Moderator (Screaming Eagle) : 8/13/2011 4:13:06 PM (GMT-6)

Posted 8/13/2011 8:54 PM (GMT 0)
I live in Calif..Where and the heck can I go to get medication...I have great health insurance..I feel so sad for some of you here..This is important.People should be allowed to feel no pain..ditto...Sometimes advil and aspirin don't work..Its funny because my husband is a recovering alcoholic and refuses to take any pain or muscle relaxant and hes 65 just because of the abuse from years ago..These pain and muscle relants were made for a purpose and when someone has a real bona fide condition..Give em by all means hand over the meds

I think I'm getting carried away..I am passionate..
Posted 8/13/2011 9:37 PM (GMT 0)
wow.  sorry you have to deal with some of these docs.  I honestly think you need to find a new doc- even if it takes a few more appts.  it is luck of the draw sometimes.  i have crohn's disease and for the past 2 years the pain has been insane.  my primary gave me percs at 1st, but only for a month and told me to find a pm doc to manage that dide of things...my GI absolutel refused to deal with the pain portion of my disease...

the pm doc i found has relative with crohn's so knew exactly what i am going through- i was shocked...he was completely empathetic, as are all of the assts, pas etc. in his office...they are a HUGE pm practice- i think the largest in az...i understand why docs need to be careful- there are a lot of people looking for the high...but docs also need to realze (and a lot do) that the pain we all deal with on a daily basis is awful and truly affects our happiness and ability to live our lives normally.

once you find one of these docs you'll be in a much better place, so keep your chin up and keep looking.  don't give up.  it's your life and ifyou need pain meds to be able to get out and ENJOY life, not just painfully make it through the day then no one should judge you.

good luck and keep us posted.

Posted 8/13/2011 9:47 PM (GMT 0)
Just FYI to Conniebun and Mtgman...this thread was started back in December of last year...

Connie...we welcome you to HW and would love to learn more about you...If you would like to start your own thread you can use the button that reads Post New Topic....If you do this....more people will get to introduce themselves and we can get to know you better...

It's a wonderful place to be...even though we all share chronic pain...
Posted 8/13/2011 10:19 PM (GMT 0)
Snowy, if you will click on a members name you can view their last ten most recent post. You welcomed Connie..back on the 10th! smilewinkgrin

SE wink
Posted 8/13/2011 10:27 PM (GMT 0)
Yikes! I'm sorry about that...and see..I have never clicked on a name before...Learn something new each day:) Thanks SE...
Posted 8/13/2011 10:37 PM (GMT 0)
LOL!….you make me laugh!…it took me forever to learn some of this stuff and Im still learning!…it's all about sharing and learning together!

You're doing a wonderful job…supporting the members here!

SE wink
Posted 8/13/2011 11:12 PM (GMT 0)
But I am glad I am among friends who can point out my dorkiness when I slip up! I proudly wear my DORK pin when needed:) LOL
Posted 8/13/2011 11:16 PM (GMT 0)
Me Too!…Me Too! wink Im in the same club!
Posted 8/14/2011 12:13 AM (GMT 0)
i guess i should start looking at dates...i figure if it's at hte top its relevant...oh well...
Posted 8/14/2011 3:58 AM (GMT 0)
Its so hard to manage pain and deal with pain meds drs and I like what big lucy said about the effects of different meds and dependency to meds ect.I find the pains meds help,yet impair me in alot of ways.I can't take antidepressents and pain meds?or Ifeel so zombied out.Also lots of drs. don't like prescribing narcotics.I do hope you find the right dr. takecare
Posted 8/20/2011 4:03 AM (GMT 0)
I know I'm way late to responding and might possibly repeat suggestions so I apologize ahead of time if I do. But to get straight to the point I would suggest these medications for your issues.

Fibromyalgia- Savella, Lyrica, Cymbalta

Osteoarthritis- Lodine(Etodolac) or Celebrex(Celecoxib)

Sorry to keep it short and sweet but these are my suggestions to you. Sadly even in the modern age we are in now there are still WAY to many ignorant doctors out there that either still do not believe in fibromyalgia or simply do not want to take the time to do there actual jobs due to laziness and would rather take the easy route out of having to deal with stuff that takes longer to deal with and throw the usual antidepressants or "needing therapy" issue at you because of depression whether you have it or not. Little do these idiots realize your pain is causing your depression and the only way to help the depression is by treating and managing the pain not vice versa as that gets nowhere!! Anyway I wish you the best and hope your all ready getting a treatment of some kind.
Posted 11/25/2012 10:11 AM (GMT 0)
I need help finding a doctor in Chicago that is willing to titrate my opiate medications properly - someone not afraid of helping new patients. I want to work and the meds I have now are not enough to work - just to lay down and not move relatively under control 3-4/10. Can your doctor help? Are you a doctor that can help? Do you know of a specialist loot afraid to prescribe ?

My current doctor is not comfortable giving more - he is doing me a favor as is. He is only my general practitioner.

So many anti-opiate docs out there - thank you DEA - and thank you drug abusers for making these medications virtually impossible to get for those of us who need them - just so you can get high.

Northern burb of Chicago
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