NEED DR CHICAGO- OMG HELP

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AllenJames
New Member


Date Joined Jun 2010
Total Posts : 7
   Posted 6/19/2010 1:08 PM (GMT -7)   
I lost the best pain doctor in the world for the worst reason ever. Now im trying to find another...

IM on 3- 80MG Oxycontin ER 2- MS Contin ER 3- 300mg Lyrica

And I cant find a doctor in this **** state that will treat me, ive been to more then 15. EVERY SINGLE ONE Is a ******** that only cares about himself.

"Ill give you %20 of what you are on"
"We dont deal with those meds"

BLAH BLAH BLAH


Please someone h3lp me, Im so scared right now. I have five days left and ************ if I dont figure something out before then.

If you know a doctor that can handle serious pain, and isnt a intreventional bs artist. PLEASE HELP>

Post Edited By Moderator (Lindaloo) : 6/19/2010 7:20:27 PM (GMT-6)


antbuggey
Veteran Member


Date Joined May 2010
Total Posts : 594
   Posted 6/19/2010 4:24 PM (GMT -7)   
Hi AllenJames, and welcome to the forum! I am so sorry to hear what you are going through right now! I do not know anyone in you area and I am sorry. Have you been to a pain management clinic? Because you called your previous doctor a pain doctor, I am assuming you have. Hopefully there will be someone in your area on the forum, but I just wanted to welcome you and tell you that there are a lot of amazing people here that will be glad to listen and help if they can! I realize that does not do a lot for your situation and I am sorry.

Hang in there and take care of you!

Beckey

Tirzah
Veteran Member


Date Joined Jul 2008
Total Posts : 2280
   Posted 6/19/2010 5:04 PM (GMT -7)   
I know a fantastic doctor, but he only takes patients on referral, doesn't accept medicaid & would need to review your records from your prior PM before prescribing anything to you. That said, if you have a neurologist or PCP who would write you a referral (with diagnosis) and the "worst reason ever" wasn't something like you took extra medicine, used drugs other than those prescribed to you, or were getting narcs from 2 different doctors at the same time then feel free to email me at the address in my profile.

I will note, however, that threatening suicide if you don't get your pain medicine by a certain date will definitely not fly with him ... even if you don't mean it. I get being in pain -- horrible pain where you literally wet the bed because you can't even get up to use the washroom. I get that that sucks. But you're not likely to find a doctor who can get you in for a new patient appointment, do a thorough workup & make a sound decision about treatment in such a short time. Making threats will work against you, not help you. And if you think you're miserable now, wait until you are locked in a psych ward & refused even the Lyrica.

I know those are harsh words & I truly wish you nothing but peace & healing, but your words are making you come across like a drug-seeking addict. I'm assuming you aren't one because pretty much every PM in the area now does routine urine tests at every (or nearly every) visit to screen for a whole host of substances & to measure levels of those meds that actually were prescribed and they will basically all kick you out if you mess up once. But new PM's won't always give you the benefit of the doubt if they hear certain words & phrases. So you really need to watch your words.

You're right to say that the area is being taken over by PM's who are either interventionalists or physiologists or such. It is not easy to find a PM who actually prescribes. My PM also does surgery & such (and he does like to try things other than pain meds, if the pain can be controlled through other methods), but he is willing to prescribe if needed to augment non-pharmacological treatments.

If I can be of help, feel free to email me. But know that you will probably need to wait a couple weeks to get in (good PM's are worth the wait), so you may want to plan to contact either your former PM or your PCP/neuro to ask for a refill on your Lyrica [maybe even an increase, if appropriate) & something to help manage the pain & withdrawals (if it were me, I'd see if they could give me some extra lyrica -- yes, it makes you sleepy to the point you can't function, but it's better than pain -- and nsaids for pain (torodol is super strong -- can't take too many of them or you will get ulcers, but it could work for a handful of days, maybe) and catapres for the withdrawals or something else that would help with those].

Yes, life is going to suck for a week or so. I'm not saying it won't. But after that you would have a good PM who will take care of you. And in the meantime, you can always come here for support. :)

feel better,
frances

AllenJames
New Member


Date Joined Jun 2010
Total Posts : 7
   Posted 6/19/2010 5:23 PM (GMT -7)   
Naaa.. I messed up though.

I was abused as a kid and have a hard time talking to adults, or telling them they are wrong.

I was trying so many differenjt meds from the dr that the3y where getting filled at different times. So instead of 3 oxys a day, 2 ms a day. I did MS for one week, oxys for three weeks. When I got teasted at just the wrong time it showd no MS in my system.

The dr didnt want to let me go, but rules are rrules. He will wright a sugestion... THanks

AllenJames
New Member


Date Joined Jun 2010
Total Posts : 7
   Posted 6/19/2010 5:24 PM (GMT -7)   
IVe tried every pain clinic I can find in a 30 mile radius, they are all jokes. INtreventional pain clinics, whatever that meens its for people that arent hurting like me.

- AJ

Mrs. Dani
Veteran Member


Date Joined Jun 2009
Total Posts : 2787
   Posted 6/19/2010 5:51 PM (GMT -7)   
 
 
   Dear Allen,
 
      I am unsure if you are here looking for support or just for doctor refrences, but either way I wanted to welcome you to the Chronic Pain Forum. We have a great group of folks here and I think you will find this is a relaxing environment to be in. You didnt mention why you are suffering so much pain? It sounds like it is very bad, and I am so sorry you are having such a hard time right now.
 
     I wanted to mention that many of us here have what you term "INtreventional pain" releif methods as a part of our overall pain management. It is done in addition to other therapies.... meds, physical therapy, pain psychology, et al. I myself have cortisteroid done in a series of 10 (5 on either side) along my spine. But, it is only one small part of my overall pain management. 
 
 
    I am not sure what you mean when you say your perscription meds were improperly perscribed? I am kinda confused. Reguardless though, if the doctor messed up the perscribing times, then he/she needs to correct the mistake. The last thing you need is a mistake like that in your medical records!
 
     As far as doctor go, if you have tried many places without any result, you might want to try a teaching hospital? So that your pain can be approcahed with the most up to date procedures, technologies and medicines. Hopefully this link will help..
 
 
     It was very nice to meet you and again welcome to the CP community.
 
*hugg*
  dani
Two roads diverged in a yellow wood
And sorry I could not travel both
And be one traveler, long I stood
Chronic Pain Moderator


Hello~Kitty
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Date Joined Jun 2005
Total Posts : 610
   Posted 6/19/2010 8:00 PM (GMT -7)   
AllenJames,

Sorry about your situation, and welcome, but I don't quite understand the situation with what happened....even if you get your meds filled at diffrent times, you should still be able to take them as prescribed....That just makes no sense to me...it sounds to me like some eople I have heard that take their favorite pain med and take it all really quickly then take the lesser pain med to get them through til their next refill....doing things like this are gonna stick with you....any doctor that may even think about prescribing high doses of pain medication is gonna want proof, like MRIs, and other things you've tried for pain.

Also I've never heard of JUST pain medication for pain unless what you have is terminal, almost all situations have other means of pain releif, like physical therapy for muscle problems, shots for backs, sometimes surgery, ect....and I have feeling your not dying from anything or else your doctor wouldn't of dropped you as when it's end of life situation, it's just keeping the one comfortable which usually means you can take all the pain meds you want sometimes.

But if your at the end of your rope, and scared of withdrawals, then use Suboxone. I use it for pain as it helps my pain, but for some it doesnt do squat for pain, but it's enough to get you out of withdrawals.

But like others have said, with needing that much pain meds, it's gonna be really hard to find someone, so try big hospitals, maybe even ask your pharmacist. My pharmacist gave me list years ago of doctors that did pain managment. Your not talking about a few vicodins, what you have is pretty powerful stuff at very high doses, which is gonna make it very difficult, so don't give up.

-hellokitty

Carmen~*~*~Chronic Pain Moderator

DX-Chronic Pain due to two freak car accidents, Pancreatic Divisum, Fibromyalgia, Asthma, Depression w/anxiety, Migraines, and Kids!!!

Meds- Suboxone 16mg for pain, Cymbalta 60mg, prilosec, Zyrtec, ProAir inhaler, and the best medication is my puppy, kitty, and 5 guinea pigs!!!

 


Chutz
Veteran Member


Date Joined Jan 2005
Total Posts : 9090
   Posted 6/19/2010 8:44 PM (GMT -7)   
Hello James,

And welcome to Healing Well. I'm sorry you're so miserable right now. I looked again at what you are taking. You take BOTH Oxycontin and MS Contin? I've never heard of any doctor prescribing both of those at the same time. I searched online and could not find any recommendations for using them together. If you are using one particular pain medicine it seems risky to add a different one to it, especially the high doses you are taking.

The other question I have is your age. Your comment, "I was abused as a kid and have a hard time talking to adults, or telling them they are wrong." This implies you are still young and not yet an adult since you are not able to "tell them they are wrong". I know of no doctor who would prescribe even one of those medications to someone who is young unless they are dying of cancer or another extremely painful disorder. Most physicians will not prescribe any kind of opioid for young people. We've had many people under 20, even under 30, who truly need pain relief and no doctor will prescribe anything strong enough for them.

James...are you taking medications that you shouldn't? That combination can kill you. I'm very concerned about you so I have spent the last hour reading on drug sites where guys discuss how they abuse and misuse these two drugs. I've also been reading about how these medications are prescribed. I do know plenty about these as I have been prescribed MS Contin to try for pain relief. That didn't help and I've been on Oxycontin for several years. These are not something to mess with.

I'm sure you are getting frightened and you have good reason to be. Get yourself to an ER and tell them what's going on. They can help get you on a Suboxone treatment, like Hellokitty suggested, so you don't suffer most of the withdrawal effects. Not only can these drugs kill you but going cold turkey can also. Please ask for and get some help. There is no doctor who will prescribe what you want in just a few days. ER is your best option right now.

Please keep in touch. We really do care that you are OK! Let us know that you are OK and what you are doing.

Hugs,
Chutz
Gravitation is not responsible for people falling in love.
Albert Einstein

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(> <) Co-Moderator Fibromyalgia & Chronic Pain Forums
Fibromyalgia, PTSD, UC, Diabetic on insulin, collapsed disk, arthritis scattered around and a few other delights.


Hello~Kitty
Veteran Member


Date Joined Jun 2005
Total Posts : 610
   Posted 6/20/2010 1:13 AM (GMT -7)   
AllenJames,

Just wanted to put some input that you can go to the Suboxone main websight or NAABT websight and they have a thing where you can type in your zipcode and they will give you a list of certified doctors in your area that do Suboxone, and also they have thing where you can type in your information and doctor/s can contact you when they have room for paients. The Suboxone websight also has a "Here to Help" program where you can talk to someone and they can help you find treatment that way also. I got in with my Suboxone doctor right away, the next day, which was wonderful.

I'm not trying to say that you should go this way, as of course I'm not a medical perfessional of any sort, but it's an option if you can't find a doctor right away. I've had alot of doctors that have suddenly up and disappeared due the area I live in having problems keeping any doctors and the few doctors that I did find had bad bedside manners. I even had one doctor refuse to get a new scan of my back for some odd reason and I felt like we wernt getting to the root of my problem and his answer was to just up my medications, and beleive it or not, that made me upset. Thats when I decided I just wanted nothing to due with pain meds anymore and wanted to get off of them for good, but the doctor had me on such a high dose that just stopping was scary and made me terribly sick, and the doctor had no idea how to help me wean off, so I found a Suboxone doctor to help me wean off and I found Suboxone was a wonderful answer to my pain and we've decided to keep me on it for pain control. So I take Suboxone has absoutly nothing to do with addiction, so dont feel like we're calling you an addict, but it can help.

-hellokitty

Carmen~*~*~Chronic Pain Moderator

DX-Chronic Pain due to two freak car accidents, Pancreatic Divisum, Fibromyalgia, Asthma, Depression w/anxiety, Migraines, and Kids!!!

Meds- Suboxone 16mg for pain, Cymbalta 60mg, prilosec, Zyrtec, ProAir inhaler, and the best medication is my puppy, kitty, and 5 guinea pigs!!!

 


AllenJames
New Member


Date Joined Jun 2010
Total Posts : 7
   Posted 6/20/2010 6:07 AM (GMT -7)   
I didnt just hop onto these meds, but you understand my problem now. Ive been going doctor to doctor for years, the same time attempting suicide once, and thinking of it non stiop.

The pain I feel is so god darn bad! I played football for years, I played LB and my job on that side was to run into the full back, usually the tuffest guy on offense. My job on Offense was FB, and I ran into the LB(Line backers) usually the tuffest guys on D. After college I did construction, and waited tables.

I cant even do laundry now without being hunched over after and barelly walking for a day to a week.

A great doctor finally realized I need long acting pain meds all day. But now as I go to other so called pain clinics, they are **** jokes that only care about themselfs. Ive tried lower pain meds, and lower numbers of pain meds. It didnt help, I simply cant live without having this pain I have to deal with.

And ive tried 17 injections, therapy numerous times, chiropracters numerous times, and was up for surgery before Noam Stadlen and the CINN clinics of back surgeons. They recomend never to let anyone operate on my back.

Please I need a doctor that is more about patients and not themselfs or im gone.
 
(put * in place of curse words)

Post Edited By Moderator (Dani Henson) : 6/20/2010 11:05:34 AM (GMT-6)


AllenJames
New Member


Date Joined Jun 2010
Total Posts : 7
   Posted 6/20/2010 6:09 AM (GMT -7)   
Dani Henson-

I ment that I was geting them at different times, even though the Dr assumed I was geting them at the same time. I took a drug test and because its been three weeks sense I took any MS contin, it showed I had none in my system. They had to assume the worst... but its simply madness that a guy in my spot would not be taking all his meds.

AllenJames
New Member


Date Joined Jun 2010
Total Posts : 7
   Posted 6/20/2010 6:22 AM (GMT -7)   
Kitty its imposible, ive been to more then 15 I did the math on this a hour ago. They are all rediculouse *****. Care about themselfs more then any kid crying for help.
 
 
(put * in place of curse words)

Post Edited By Moderator (Dani Henson) : 6/20/2010 11:06:47 AM (GMT-6)


AllenJames
New Member


Date Joined Jun 2010
Total Posts : 7
   Posted 6/20/2010 6:37 AM (GMT -7)   
There is a former football player that two years back.... Doctors just dont get it, and this country dose not get it. Some people hurt worst then others, some people even if great at dealing with there pain, cant get threw life with simple meds.

This poor player wasnt famouse, didnt even make it in the league more then three years. But he abused his body trying just as bad as anyone. Then he went doctor to doctor geting jerked around with injections, joke meds. THis once great country is a ***** joke.
 
 
(Put * in place of curse words)
 
 
 

Post Edited By Moderator (Dani Henson) : 6/20/2010 11:11:53 AM (GMT-6)


Mrs. Dani
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Date Joined Jun 2009
Total Posts : 2787
   Posted 6/20/2010 10:36 AM (GMT -7)   
 
 
   Dear Allen,
 
    Im sorry. I just cant quite seem to understand your prediciment. I have many medicines that I have to take...all of the more..stronger meds had to be slowly increased over time (months in some cases)and I am not permitted to stop taking them suddenly under any circumstance. Not even if I wanted to.  shakehead   Even when I had to switch to a new doctor...  the new and old doctor come up with a transition plan so the switch was easy. There were no lapses in dosing or care. The transition was done very smoothly.
 
      It occurred to me if it has been three weeks since you took your med, and are only on one other type of pain med, that should be easy to stop whille you look for different doctor. I was under the impression that you took many meds that cause withdrawl. So, it is good you are only on one. Hopefully you will be able to get a new doctor quickly. Did you hurt yourself playing foot ball? Or was it slowly increasing problem? Mind my asking what areas of your spine are damaged and how?
 
     I hope you found the hospital link useful. I hope you can find a few moments to relax today. Hang in there
 
*hugg*
  dani
 
    
Two roads diverged in a yellow wood
And sorry I could not travel both
And be one traveler, long I stood
Chronic Pain Moderator


PAlady
Veteran Member


Date Joined Nov 2007
Total Posts : 6795
   Posted 6/20/2010 3:37 PM (GMT -7)   
Allen,
I have to echo what Chutz, our main forum moderator has said. I'm very concerned if you're really taking both of those medications at the same time. It would make no sense for a doctor to prescribe them both, or even alternating, as they're both extended release ("contin" is short for "continuous") medications. It's difficult to find doctors who will place us on those medications, but especially if you're young. Being placed on one would be the maximum, though, and then possibly with some breakthrough medication, which would NOT be another extended release medication, but a short-acting one, to help cover your pain between doses of the extended release medication.

And like others have said, most of us have to put a package of of treatments together to manage our pain, and medications are only one part of that.

I'm very concerned that you keep referring to suicide, especially since you say you've attempted it before. You really need to get some serious help ASAP. You can go to an ER, or you can use some of the resources in the CP101 thread at the top of the page of the chronic pain forum. The suicide hotline is listed there (1-800-SUICIDE), and people can help you find someone to keep your from making a drastic mistake in the area where you live.

But we aren't here to give medical advice. We are a chronic pain support group, and while we can provide support, you need professional assistance to help with both the medications and your suicidal thoughts. ER personnel can help you find help for both.

Please also read the forum rules. We can't get into discussions about suicide, although I do want you to know there's help out there. Many of us with chronic pain also deal with depression, so it's not a weakness, but your statements while you're in the middle of confusion over medication use do concern me. Please get some help. Also, it's a family friendly site so while we all at times have strong feelings about many things related to dealing with pain, we have to watch the language we use here.

Please find some professional help soon, and let us know how it goes.

PaLady

Tirzah
Veteran Member


Date Joined Jul 2008
Total Posts : 2280
   Posted 6/21/2010 10:30 AM (GMT -7)   
Hi AJ-

I thought maybe it would help to give you a link to some resources that explain how pain clinics work, factors that doctors consider when deciding what treatment(s) is(are) appropriate, what treatments are used for treating pain, and what the benefits/risks of different medicines. They update it regularly & a lot of pain clinics refer to it for updates. One of the nicest things about it, imho, is that it includes some of the very newest meds that sometimes can be used even in people who struggle with addiction (not saying you do, just that there are options). www.theacpa.org/9/PainManagementTools.aspx

But there is an important quote from it that I wanted to share with you:
"The dilemma with the long term use of opioids is that while there is a role for opioids in chronic, non-cancer pain, it is well known that prolonged use of opioids may result in problems including tolerance, hyperalgesia (increased pain sensitivity), hormonal effects (decreased testosterone levels, decreased libido and sex drive, irregular menses), depression, impaired sleep patterns and suppression of the immune system. The chronic utilization of opioids may also impair functional recovery in an individual’s recovery from surgery or with long-standing musculoskeletal disorders."

A lot of doctors weigh these factors heavily -- perhaps a bit too much, even -- so it is important for you to be aware of that. For me, personally, when I was on a higher dose & more meds, I experiences many of those issues -- though I didn't realize it until I got healthier and was able to cut back dramatically on the meds. I have to wonder whether some of the extreme depression & horrible pain you are feeling might be the result of being on such a high dose of pain meds.

The one thing that my PCP would always tell me, and it was wise of her, was that if I started on extremely high doses of meds in my mid-20's, what would I do when I reached my 40's & completely maxed out on pain meds. You're probably already at the maximum daily dose on the MS & oxy. So forget about 40's, what are you going to do when you hit 30? I'm NOT saying you should live in pain, just that it might be worth trying even more non-pharmacological options.

17 injections seems like a lot of shots if you had absolutely no benefit whatsoever. Maybe that was the case, but most of us get maybe a couple of days with 25-50% reduction in pain. If you had at least 20% less pain for 2-3 days, that is considered successful. If you did get that kind of relief, then there are other options out there for you for longer relief. If you really did get no relief at all, then either the doc wasn't finding the right place or shots aren't the right treatment for you. There are different types of PT (some that are entirely passive -- some are done in a heated pool -- etc.).

So I just want to encourage you not to give up on everything. Things really can get better. I was on 17 meds (either for pain, or for side effects of pain meds, or for side effects of the meds for the side effects of the pain meds). If I had 2 people helping me, I could be dragged from my bed screaming at the top of my lungs until I went hoarse. But my PM worked so hard at figuring out what I needed & getting everything set up for me. He worked closely with a NS to help me avoid low-back surgery. It did take time -- after year 1, I got quite a bit better; after 2 years, I now can walk nearly 1 mile at a time, I go to work every day, I do shopping & laundry and can do light workouts for 15-20 minutes at a time. No, I'm not back to running 7 miles a day and I'm probably never going to be running half marathons again, but my life is not totally ruined either. Things got better & I'm now on very low doses of 2 meds and am cutting back on one of those (the other is Lyrica, so I'll probably be on that forever, but that's ok).

If you do end up in withdrawals, I've had friends who've said Chicago Lakeshore is pretty good -- they do take patients on an emergency basis (most ER's send patients there anyways, so save yourself some time & money & just go straight there), but if you can set up an intake appointment that goes smoother. They are the most humane by far.

And if you can talk with your ex-PM asap about slowly reducing the meds you're currently on until you run out, that would almost for sure be better than just going from your current dose to nothing at all.

good luck,
frances

Post Edited (Frances_2008) : 6/21/2010 4:47:00 PM (GMT-6)


MsBunky
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Date Joined Jan 2010
Total Posts : 1097
   Posted 6/21/2010 10:53 AM (GMT -7)   
Frances, I just wanted to commend you on an excellent post for AJ. You've provided great information and many options for the OP, so I'm hopeful he takes that information and does something with it.

To AllenJames: I too am confused about the situation with your meds...it sounded to me in your first posts that your doctor would prescribe 2 or 3 drugs for you at a visit, but you didn't fill all the prescriptions at the same time...instead, you took the Oxycontin first until it was gone, then you would start on the next drug until it was gone...is that correct? If you were told to take them together, and you didn't, then I can understand why your doctor would be frustrated with you...did you tell him why you hadn't filled the RX? Was there a money issue, that you couldn't afford to buy all the meds at the same time?

I'm really sorry you're in so much pain, but you HAVE to work with your doctor to achieve good results...it can't be a battlefield. What exactly is the injury you've been diagnosed with? How old are you?

I can tell you're angry and you feel robbed of your normal life - anger is often experienced when there's an unexpected challenge. However, to go around and curse about all the lousy doctors and how no one and nothing can help you is simply immature. If you are completely honest with yourself, then you know that you have contributed much to their dismissal of you by being uncooperative, belligerent, and demanding. You are hurting yourself by not working with your doctor to find answers. Now, you've got no doctors left to contact....and you're still in pain.

The only two choices I see that you really have right now are to (a) ask your doctor who just dropped you if there is anyone he can recommend, or (b) go to the ER and see if they are able to help you. I think you probably need to cut down some meds, but you have to be supervised for that.

I don't know if my words will mean anything to you. I truly hope you are able to accept your role in this and then work with your doctor to try and find a solution. I will be praying for you.

Pam
Conditions: Fibromyalgia, Severe Myofascial Pain, Chronic Pelvic Pain (with permanent muscle damage), Femoroacetabular Impingement (CAM and Pincer), Reynauds, IBS, Surgical Adhesions, Ophthalmic Migraines, Severe Hot Flashes (both Surgical Menopause and medication related), plus physically unable to vomit due to the Nissen, and I have extremely tiny veins with a lot of scar tissue...a joy when it comes to having to give blood or get an IV started

Surgeries: Appendix, Uterus, Nissen Fundoplication for GERD, Left Ovary, Gallbladder, Right Ovary, TVT

Medications: Oxycontin, Cesamet, Tramacet, Cymbalta, Flexeril and Clonidine plus Laxaday, Vitamin D and a Multi-Vitamin daily


Blessedx8
Veteran Member


Date Joined Aug 2008
Total Posts : 3193
   Posted 6/21/2010 1:33 PM (GMT -7)   
Hey all,

Sort of off topic... :) ... but I just wanted to say that for a period of time (1 year+)... I was on a combo of Oxycontin and MS Contin, plus a med for breakthrough pain (all through a pain clinic, of course). It's not a "typical" thing that's done.... but, sometimes meds work differently for people.... and, instead of going up so high on one, they'll add another one on board. This was done after experimenting w/ a ton of different combos... again, not a typical thing - but I have seen others prescribed different combos of stuff.

Anyway, I just say that for an "FYI" kind of thing.... I know we sometimes read something here that's not typical - and we think something is not right.... I guess I'm extra sensitive to it....because before I finally reached the right combo of meds and became the assertive woman I now am... :) I went through a period of time that people (doctors, nurses, family, so forth) would see my combo of meds and pass major judgment.

The person's situation may not relate to what I've said and there definitely sounds like there are other factors going on. I just think we need to be careful when we see something here that's "atypical" (two long-acting meds, etc).... and try hard not to pass judgment w/ the way we say things here.

AllenJames - I can tell you are really struggling. I've been through many hard times, too. Hang in there; I know it's difficult, I really do.

--Tina
Main Health Problems: Dysautonomia/POTS; CFS/Fibromyalgia; Severe Chronic Hypertension; Hypothyroidism; Hypoadrenalism; Mixed (Obstructive/Central) Sleep Apnea - on Auto BiPap; Depression/Anxiety; Severe Vitamin D Deficiency

Pain Issues: Cervical/Thoracic back pain (they called it DDD...but I don't know); migraines; carpal tunnel syndrome; widespread joint/muscle pain, nerve pain in hands/arms/feet; Future Plans: Intrathecal Pain Pump; already completed trial (Sept, 2008); awaiting my decision for implantation...


PAlady
Veteran Member


Date Joined Nov 2007
Total Posts : 6795
   Posted 6/21/2010 1:40 PM (GMT -7)   
Momto6,
Point taken. I do apologize for being too definitive in my earlier post, and agree that many meds can be used in atypical ways. But it does seem that Allen isn't using them as prescribed regardless, and I am concerned about anyone who's making serious statements as he is. But you're right, as long as we're following how medications are being prescribed for us, many combinations may be possible.

Allen -you've had some excellent information posted to you here from several people. I do hope you take Frances up on her suggestion as she knows the resources in your area. Please, get some help and let us know how you're doing.

PaLady
p.s. Frances - did I miss something or did you mean to include a link in your earlier post? It sounded like it could be a very interesting link, maybe something that could be put in CP101.

Post Edited (PAlady) : 6/21/2010 2:43:38 PM (GMT-6)


Blessedx8
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Date Joined Aug 2008
Total Posts : 3193
   Posted 6/21/2010 2:19 PM (GMT -7)   
PaLady,

I appreciate your thoughts... just wanted to say, though, that I wasn't targeting you :) (or anyone in particular) w/ what I said. I just wanted to make sure I shared my experiences. But I hear what you are saying re: only using meds as prescribed, definitely...and the concerns you raise.

Take good care... --Tina

Tirzah
Veteran Member


Date Joined Jul 2008
Total Posts : 2280
   Posted 6/21/2010 4:09 PM (GMT -7)   
PA-
Thanks. It's been a crazy day -- started PT again (I think this is round 7, but this one seems like she actually knows a thing or two :). I've posted the link. It's the same site I've posted before. ACPA is a great resource. They do a lot of education as well as some advocacy. My PM often refers people there. They've put some new stuff, though, about Interdisciplinary Programs (which is what many of us are blessed to have found -- interventional treatments plus meds plus pain psychology plus alt. med).

They also have a section on Medications & Treatments www.theacpa.org/8/MedicationsAndTreatments.aspx. This is the section that I have referred to in the past, but it is updated now to include rationales for why docs should consider opioids as well as why some avoid them (including legit & illegit reasons). I'm excited to have found out today that there is a new med out there -- Onsolis -- that I want to ask my PM about. It is similar to what I have, but without any sugar or sugar alcohol (I'm tired of getting my teeth drilled & in spite of cutting my dose way down, I still get the same amount of sugar -- uggh!). Plus, they go through "home remedies" and talk about which ones are proven versus not and a whole bunch of other ideas.

I know we all get so aggravated when we hear that we've tried everything there is to try. I'm sure our most of doctors are trying to keep up with all the new meds, new research & new techniques, but the rate of growth of new ideas, treatments and research about things that were previously deemed safe & now are in question is phenomenally fast. Sometimes we need to be our own advocates -- even those of us who are really lucky to have smart doctors who are constantly reading up on the latest & greatest.

They also have a section that explains what different diagnoses are. Definitely helpful for those who are newly diagnosed (or those who never had someone explain what's wrong in plain English).

Tina,
Thanks for your post. I was thinking of posting the same thing. I know a time or two I was told that there was no way I was on a certain combo of meds. But sometimes we need doctors who can think outside the box for long enough that we can get better, and then go back to more "normal" treatment regimens. :) Even if that doesn't apply in this case, it's good to memorialize that thought for any future readers. ;)
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