jencat
08-09-2008, 01:28 AM
I guess my dilema is how do I ask for more pain control. Right now, I am a 9. I have been on Fentanyl 50mcg for about 3 yrs for chronic neck pain, Zanaflex 2mg - 1 tab 3 times daily. My PM doc has done numerous trigger point injections, most recently to a new pain in my back/rib area (pain started in mid-back & sent electric current right through me to the front). My most recent problem he treated with trigger point as well, but very little relief.
To back up a little, when I first went to him, I had a series of 4 epidural injections, that were the worst experience of my life! I have refused these things ever since. After each one, I was barely able to move for several days, unable to walk upright, and had multiple problems from the injections which did wear off finally. The reason he put me on Fentanyl was that I cannot tolerate many of the other opiate options out there, so went from Darvocet to Fentanyl. I know from reading here that will shock many of you, but at the time I really did not know any better.
Fast forward to now, since his attempt to stop back/rib pain last month failed, I asked for options and was told to try a good chiropractor. The chiro is a really nice man (at least he xrayed me and determined that I indeed have significant mid & lower back problems in addition to my neck). Surgery is not even an option now, just try to manage this pain. My mom has Alz & is in a NH, I am an only child, my father is dead and I am all she has, so I cannot be hospitalized for surgery since she is in stage 7, and could go any time.
Having given you an overview of me, I do read a lot of your posts, and have learned a lot from you. The chiro is nice, but is making my pain WAY WORSE - my GP, whom I saw today, suggested I give him a chance, 2 more wks to see if I get any temporary relief. Chiro himself told me that with the mess he saw (and I saw too) on xray, any relief will be temporary.
Does anyone here have suggestions as to how I can ask my PM to up my meds without seeming like a drug seeker. I have always complied with all aspects of my PM contract (even when that meant 2 weeks of crying from pain level of 9-10, just to get in to see him - result was trigger points that did not last but 4 days). I have tried to ask him, but he always turns the conversation around to, "well, you don't really want that, lets try this... " As you can tell, I am in awful pain, going to a chiro who might, maybe give me relief if I live thru 2 more weeks of hell. How do I get my PM doc to see that I just cannot stand this pain level. My very best with him I ever get is a 6, and I usually live around an 8. I can stand this, but cannot handle current level (9.5+), I don't know what to do. Also, my PM doc does not believe in BT meds, says patch is sufficient (if I hear him say that one again, I will scream in his office).
I would change PM docs, but there are not other options in this area. I cannot drive due to seizure disorder, my only transportation to this PM doc is my MIL & if she is ill, then a very expensive taxi ride ($80 each way). I go monthly to his office to pick up my rx, and see him every 3 months, as he reqires.
Any suggestions appreciated, I just don't know what to do now. Also, cannot go to ER for ANY pain, it states that in my PM contract. I had a fall a couple of months ago & a well meaning friend took me to ER, when I woke up there I freaked out, but the damage was done. I did not accept any pain script from the ER doc, made him document that on my discharge papers (I did have a mild concussion, which cleared me from any problem with PM doc, called his office the next day to report ER visit, they checked & called me back to say OK to go to ER for fall & hit on head as long as I did not accept any meds). When I saw my PM doc next, he cautioned me against going to the ER, I explained I was not conscious when taken by a friend & reported it to his office the next day & he said 'hummm.'
I just don't know what to do. I am currently sitting in a chair alternately typing & grabbing my ankles for any relief I might get from stretching. Sorry post was so long.
To back up a little, when I first went to him, I had a series of 4 epidural injections, that were the worst experience of my life! I have refused these things ever since. After each one, I was barely able to move for several days, unable to walk upright, and had multiple problems from the injections which did wear off finally. The reason he put me on Fentanyl was that I cannot tolerate many of the other opiate options out there, so went from Darvocet to Fentanyl. I know from reading here that will shock many of you, but at the time I really did not know any better.
Fast forward to now, since his attempt to stop back/rib pain last month failed, I asked for options and was told to try a good chiropractor. The chiro is a really nice man (at least he xrayed me and determined that I indeed have significant mid & lower back problems in addition to my neck). Surgery is not even an option now, just try to manage this pain. My mom has Alz & is in a NH, I am an only child, my father is dead and I am all she has, so I cannot be hospitalized for surgery since she is in stage 7, and could go any time.
Having given you an overview of me, I do read a lot of your posts, and have learned a lot from you. The chiro is nice, but is making my pain WAY WORSE - my GP, whom I saw today, suggested I give him a chance, 2 more wks to see if I get any temporary relief. Chiro himself told me that with the mess he saw (and I saw too) on xray, any relief will be temporary.
Does anyone here have suggestions as to how I can ask my PM to up my meds without seeming like a drug seeker. I have always complied with all aspects of my PM contract (even when that meant 2 weeks of crying from pain level of 9-10, just to get in to see him - result was trigger points that did not last but 4 days). I have tried to ask him, but he always turns the conversation around to, "well, you don't really want that, lets try this... " As you can tell, I am in awful pain, going to a chiro who might, maybe give me relief if I live thru 2 more weeks of hell. How do I get my PM doc to see that I just cannot stand this pain level. My very best with him I ever get is a 6, and I usually live around an 8. I can stand this, but cannot handle current level (9.5+), I don't know what to do. Also, my PM doc does not believe in BT meds, says patch is sufficient (if I hear him say that one again, I will scream in his office).
I would change PM docs, but there are not other options in this area. I cannot drive due to seizure disorder, my only transportation to this PM doc is my MIL & if she is ill, then a very expensive taxi ride ($80 each way). I go monthly to his office to pick up my rx, and see him every 3 months, as he reqires.
Any suggestions appreciated, I just don't know what to do now. Also, cannot go to ER for ANY pain, it states that in my PM contract. I had a fall a couple of months ago & a well meaning friend took me to ER, when I woke up there I freaked out, but the damage was done. I did not accept any pain script from the ER doc, made him document that on my discharge papers (I did have a mild concussion, which cleared me from any problem with PM doc, called his office the next day to report ER visit, they checked & called me back to say OK to go to ER for fall & hit on head as long as I did not accept any meds). When I saw my PM doc next, he cautioned me against going to the ER, I explained I was not conscious when taken by a friend & reported it to his office the next day & he said 'hummm.'
I just don't know what to do. I am currently sitting in a chair alternately typing & grabbing my ankles for any relief I might get from stretching. Sorry post was so long.
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Executor
08-09-2008, 02:57 AM
Does anyone here have suggestions as to how I can ask my PM to up my meds without seeming like a drug seeker. I have always complied with all aspects of my PM contract (even when that meant 2 weeks of crying from pain level of 9-10, just to get in to see him - result was trigger points that did not last but 4 days). I have tried to ask him, but he always turns the conversation around to, "well, you don't really want that, lets try this... "
Sorry to hear about your pain. Not much is worse than being under medicated, IMO.
It seems as if you have a very solid history with this Doc, so I think there is little to no chance that he will think you are a seeker. What you are experiencing is normal anxiety, that most of us have @ one time or another. I think you have to go in and tell your Doc point blank that you are in a tremendous amount of pain. I would tell him that you've been very patient and compliant and that you really need some extra coverage. Don't request any specific medications or regimens...But rather say "Doc, I'm in a lot of pain....To the point where I don't know how much more I can take. Can we please look at doing something to help. Can we try a new med, or something for BT pain"? Do you have any BT meds currently? You should.
Hopefully, others will chime in here too and give other suggestions. But, It think you have to be very upfront....In a professional, non threatening way.
Good luck, and let me know if I can help further.
Regards,
Ex
Sorry to hear about your pain. Not much is worse than being under medicated, IMO.
It seems as if you have a very solid history with this Doc, so I think there is little to no chance that he will think you are a seeker. What you are experiencing is normal anxiety, that most of us have @ one time or another. I think you have to go in and tell your Doc point blank that you are in a tremendous amount of pain. I would tell him that you've been very patient and compliant and that you really need some extra coverage. Don't request any specific medications or regimens...But rather say "Doc, I'm in a lot of pain....To the point where I don't know how much more I can take. Can we please look at doing something to help. Can we try a new med, or something for BT pain"? Do you have any BT meds currently? You should.
Hopefully, others will chime in here too and give other suggestions. But, It think you have to be very upfront....In a professional, non threatening way.
Good luck, and let me know if I can help further.
Regards,
Ex
sammyo1
08-09-2008, 10:34 AM
Your PM sounds pretty much like mine. He uses the same type of replies.
I am understanding as to why PM's want to try other things before raising or changing to a stronger medication. At the same time I cant see contineous suffering. Especially at those levels. Its not doing anyone any good mentally or physically. I am new to my PM & tried hinting around, but at my next appointment I am trying the direct approach & definantly am not going alone.
I am now under the belief that unless we just spit it out we get no where. I dont know about you but I am fed up with suffering. I am willing to try other methods of pain control but in the mean time I would like to have some better quality of life. That is the way I plan on putting it to my PM. I am feeling the strain of all the pain & worry & it is doing noone any good. I plan on letting him know I understand why he is being careful & hesitant to make med. changes & even respect him for this but I need to be able to function at more pain free level. Its not only costing me but my loved ones & every other aspect of my life. I hope we both get what we so badly need. Please let me know how it goes. I am always willing to learn from others. Good luck, Sammy
I am understanding as to why PM's want to try other things before raising or changing to a stronger medication. At the same time I cant see contineous suffering. Especially at those levels. Its not doing anyone any good mentally or physically. I am new to my PM & tried hinting around, but at my next appointment I am trying the direct approach & definantly am not going alone.
I am now under the belief that unless we just spit it out we get no where. I dont know about you but I am fed up with suffering. I am willing to try other methods of pain control but in the mean time I would like to have some better quality of life. That is the way I plan on putting it to my PM. I am feeling the strain of all the pain & worry & it is doing noone any good. I plan on letting him know I understand why he is being careful & hesitant to make med. changes & even respect him for this but I need to be able to function at more pain free level. Its not only costing me but my loved ones & every other aspect of my life. I hope we both get what we so badly need. Please let me know how it goes. I am always willing to learn from others. Good luck, Sammy
jencat
08-11-2008, 02:16 AM
Thanks so much for your reply, i haven't been on computer until today, so sorry I haven't replied sooner. I guess I am just going to have to follow your suggestions and point blank TELL HIM I need more relief, that this is not living. I got very little relief from the Voltaren gel (a topical gel) - most topicals are just that, something that tingles my skin a little. I have appt w/Chiro tomorrow, I think I will keep, but am calling in the am to get am emergency appt w/my PM doc. I intend to tell his nurse it IS AN EMERGENCY. I hope I can get thru to him at this appt, I am taking with me the knowledge I have obtained from all of you wonderful people who post here. I will try to use what I have learned from you to get adequate PM control. At this point, I haven't slept fully since last week, fall to sleep, accidentally move, then wake up in pain, etc.
Thanks again, and Ex-I will try to convince him I NEED BT meds. I know from reading here that this must be an accepted practice in PM medicine, so if I approach him with that knowledge (won't mention boards specifically, just internet research), hopefully he will do his job.
I am also praying for all of you who are suffering too. I read daily, just am a bit shy about posting, but you are all in my prayers.
Jen
Thanks again, and Ex-I will try to convince him I NEED BT meds. I know from reading here that this must be an accepted practice in PM medicine, so if I approach him with that knowledge (won't mention boards specifically, just internet research), hopefully he will do his job.
I am also praying for all of you who are suffering too. I read daily, just am a bit shy about posting, but you are all in my prayers.
Jen
zoey1
08-11-2008, 07:08 AM
You menentioned 2 meds i kept on thinking why he didn't try you with a cotail approach or combination. Such as low dose amitrilplen , or low dose beta blockers, or xanax . Some alternative approaches work. Have you ever been seen by a rhumatologist for artithus? That would consern me about the direction of a chiropractor, esepcaily if active RA was involed.
Also what about massasages? Have you looked into trying any alternative approaches? T Chi , meditation bio feedback.... Just a few more suggestions.
Just ask, as far as needing more help. I saw my doc thursday he noticed during the exam extra spams /pain and he is recomending extra treatment.
Good luck and i sure hope your levels get down soon. I noticed incoming storms can affect pain levels pressure as well . Is the weather acting up or changing ( just wondering)
Also what about massasages? Have you looked into trying any alternative approaches? T Chi , meditation bio feedback.... Just a few more suggestions.
Just ask, as far as needing more help. I saw my doc thursday he noticed during the exam extra spams /pain and he is recomending extra treatment.
Good luck and i sure hope your levels get down soon. I noticed incoming storms can affect pain levels pressure as well . Is the weather acting up or changing ( just wondering)
jencat
08-11-2008, 05:51 PM
You menentioned 2 meds i kept on thinking why he didn't try you with a cotail approach or combination. Such as low dose amitrilplen , or low dose beta blockers, or xanax . Some alternative approaches work. Have you ever been seen by a rhumatologist for artithus? That would consern me about the direction of a chiropractor, esepcaily if active RA was involed.
Also what about massasages? Have you looked into trying any alternative approaches? T Chi , meditation bio feedback.... Just a few more suggestions.
Just ask, as far as needing more help. I saw my doc thursday he noticed during the exam extra spams /pain and he is recomending extra treatment.
Good luck and i sure hope your levels get down soon. I noticed incoming storms can affect pain levels pressure as well . Is the weather acting up or changing ( just wondering)
I guess I should have started with a list of my current meds & diagnosis:
Meds:
K-Dur 20 meq 2xday
Triamterene 75/HCTZ50 mg 1xday
Cardura 4mg 1xday
Neurontin 800 mg 4xday (total 3200mg day)
Klonopin .5 mg 1 1/2 1xday
Nexium 40 mg 2xday
Singulair 10mg 1xday
Clarinex 5mg 1xday
Amitriptylline 25mg 1xday
Ibuprofen 800 mg 3xday
Salsalate 750mg 2-2xday
Mirapex 1mg 1xday
Keppra 500mg 3-2xday (total 3000mg day)
Fentanyl patch 50mcg - 1 patch changed every 72 hrs
Levothyroxine .15mcg 1xday
Hytoscyamine .375mg 2xday
ZomigZMT 5mg as needed
Diagnosis:
Have 1 kidney
Primary potassium syndrome
Hypertension
Non-diabetic neuropathy (probably cause of neuropathy was auto acc age 14)
Sleep disorders (OSA, CSA, PLMD, RLS, alphawave intrusion disorder) w/use of CPAP at 19cm
Fibromyalgia (26+ yrs)
Gerd (probably from years of swallowing so many pills!)
Allergies & familal asthma
Osteoarthritis
Mild RA (as of last visit w/rheumy 2 yrs ago, probably worse by now)
MS
Seizure disorder secondary to MS
Hashimotos (thyroid disorder, newly diagnosed)
Upper back, neck pain, bulging C5-6 & herniated C-7 (5 different neurosurgeons refused to do surgery because of complexity)
Meniere's (bilateral, affects balance, untreatable unless I want to be deaf in both ears)
Sjogrens (newly diagnosed)
Thoracic & back problems (diagnosed by chiro & labeled as treatable with pain control only - I intend to pursue this with my orthopedic surgeon as soon as I can get an appt - probably around Oct unless I get in on a cancel spot)
Currently need left knee replacement, right knee, hip, ankle & one of the upper bars in thigh replaced - cannot do any of this due to current condition of my mom (Alz, stage 7 & I am only relative)
Malignant Migraines
I guess with a list like this, no wonder docs look at me with fear. I have never, nor would I ever sue a physician, yet I think I must look like a legal problem waiting to happen from some of the responses I have gotten upon seeing new docs. My PM doc is the only PM doc I have ever seen, and the only one in the area that would accept me as a patient back when I started seeing him (early 2004). Numerous neurosurgeons are frightened to death of me, but I have a great orthopedic surgeon, he has done 3 surgeries and will pursue the legs as mentioned above when I am ready. Unfortunately, legs don't hurt NEAR as bad as everything else. As we all know, fibro is not 'fixable' just 'manageable' and I do best with water therapy (swimming, water aerobics and some exercising in home hob tub, with hot tub temp around 86-90 for best results).
I am thankful for all your input, but forgot to post the entire picture. And yes, weather does play a big part in where my pain level is, cold and rainy weather are the worst. Thanks so much for caring & I will keep you and all on this site in my prayers.
Jen
Also what about massasages? Have you looked into trying any alternative approaches? T Chi , meditation bio feedback.... Just a few more suggestions.
Just ask, as far as needing more help. I saw my doc thursday he noticed during the exam extra spams /pain and he is recomending extra treatment.
Good luck and i sure hope your levels get down soon. I noticed incoming storms can affect pain levels pressure as well . Is the weather acting up or changing ( just wondering)
I guess I should have started with a list of my current meds & diagnosis:
Meds:
K-Dur 20 meq 2xday
Triamterene 75/HCTZ50 mg 1xday
Cardura 4mg 1xday
Neurontin 800 mg 4xday (total 3200mg day)
Klonopin .5 mg 1 1/2 1xday
Nexium 40 mg 2xday
Singulair 10mg 1xday
Clarinex 5mg 1xday
Amitriptylline 25mg 1xday
Ibuprofen 800 mg 3xday
Salsalate 750mg 2-2xday
Mirapex 1mg 1xday
Keppra 500mg 3-2xday (total 3000mg day)
Fentanyl patch 50mcg - 1 patch changed every 72 hrs
Levothyroxine .15mcg 1xday
Hytoscyamine .375mg 2xday
ZomigZMT 5mg as needed
Diagnosis:
Have 1 kidney
Primary potassium syndrome
Hypertension
Non-diabetic neuropathy (probably cause of neuropathy was auto acc age 14)
Sleep disorders (OSA, CSA, PLMD, RLS, alphawave intrusion disorder) w/use of CPAP at 19cm
Fibromyalgia (26+ yrs)
Gerd (probably from years of swallowing so many pills!)
Allergies & familal asthma
Osteoarthritis
Mild RA (as of last visit w/rheumy 2 yrs ago, probably worse by now)
MS
Seizure disorder secondary to MS
Hashimotos (thyroid disorder, newly diagnosed)
Upper back, neck pain, bulging C5-6 & herniated C-7 (5 different neurosurgeons refused to do surgery because of complexity)
Meniere's (bilateral, affects balance, untreatable unless I want to be deaf in both ears)
Sjogrens (newly diagnosed)
Thoracic & back problems (diagnosed by chiro & labeled as treatable with pain control only - I intend to pursue this with my orthopedic surgeon as soon as I can get an appt - probably around Oct unless I get in on a cancel spot)
Currently need left knee replacement, right knee, hip, ankle & one of the upper bars in thigh replaced - cannot do any of this due to current condition of my mom (Alz, stage 7 & I am only relative)
Malignant Migraines
I guess with a list like this, no wonder docs look at me with fear. I have never, nor would I ever sue a physician, yet I think I must look like a legal problem waiting to happen from some of the responses I have gotten upon seeing new docs. My PM doc is the only PM doc I have ever seen, and the only one in the area that would accept me as a patient back when I started seeing him (early 2004). Numerous neurosurgeons are frightened to death of me, but I have a great orthopedic surgeon, he has done 3 surgeries and will pursue the legs as mentioned above when I am ready. Unfortunately, legs don't hurt NEAR as bad as everything else. As we all know, fibro is not 'fixable' just 'manageable' and I do best with water therapy (swimming, water aerobics and some exercising in home hob tub, with hot tub temp around 86-90 for best results).
I am thankful for all your input, but forgot to post the entire picture. And yes, weather does play a big part in where my pain level is, cold and rainy weather are the worst. Thanks so much for caring & I will keep you and all on this site in my prayers.
Jen
Mod08
08-11-2008, 08:20 PM
janie,
You thread has been relocated to a new thread entitled "My Story". Please always start a new thread for your own questions.
Thank you,
Mod 08
You thread has been relocated to a new thread entitled "My Story". Please always start a new thread for your own questions.
Thank you,
Mod 08
cmpgirl
08-12-2008, 02:27 AM
Jencat, I really can't add much more to what the others said. They all gave you good advice. I just wanted to say that I agree that you should try to get through to your doc that this is just no life at all, and you can not go on like this. I would also use caution when seeing the chiro. I'm sure he means well, but with everything going on in your back, I would be afraid of any kind of manipulation.
I'm keeping you in my prayers and I hope you were able to get in to see the PM. Please post back and let us know, OK? Take care and God Bless, CMP/MM
I'm keeping you in my prayers and I hope you were able to get in to see the PM. Please post back and let us know, OK? Take care and God Bless, CMP/MM
jencat
08-12-2008, 03:39 PM
Jencat, I really can't add much more to what the others said. They all gave you good advice. I just wanted to say that I agree that you should try to get through to your doc that this is just no life at all, and you can not go on like this. I would also use caution when seeing the chiro. I'm sure he means well, but with everything going on in your back, I would be afraid of any kind of manipulation.
I'm keeping you in my prayers and I hope you were able to get in to see the PM. Please post back and let us know, OK? Take care and God Bless, CMP/MM
Thanks for your thoughts & prayers and regarding the chiro, I currently am NOT allowing any manipulations, just massage & the US waves on my back. I have appt tomorrow, but may just cancel & give up on him, he is really nice, wants to help, but I really am not sure he can, and I think HE even believes I am more of a challenge than he can fix.
Hope all goes well for you too.
Jen
I'm keeping you in my prayers and I hope you were able to get in to see the PM. Please post back and let us know, OK? Take care and God Bless, CMP/MM
Thanks for your thoughts & prayers and regarding the chiro, I currently am NOT allowing any manipulations, just massage & the US waves on my back. I have appt tomorrow, but may just cancel & give up on him, he is really nice, wants to help, but I really am not sure he can, and I think HE even believes I am more of a challenge than he can fix.
Hope all goes well for you too.
Jen