Monday, November 30, 2009 meagan1978, Community Member, asks

Q: I can't get a doctor to help me manage my chronic pain

I have been dealing with chronic pain all over my body for about three years now and have been on everything and diagnosed with everything. The only thing that helps is pain killers which is not something any doctor I have seen is willing to give me... because they can't 'see' whats causing the pain they think I am pill seeking... it has been so frustrating because no one will listen to me. I need any advice I can get!!

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Answers (4)
GJ, Community Member
12/21/09 11:24pm

I am 27 and have been on the most powerful pain medication combinations prescribeable. It all started when I was 17, so for the last 10 years I have been sterotyped by almost every doctor, pharmacist, pretty much anyone I tell what I am taking.  From the age of 20 to 23 I was taking 3x 60mg MSContin, 2x 40mg Methadone, 4x8mg Dilaudid, 4x 1600mcg Actiq(fentanyl transmucusal suckers). I was going to a pain clinic and being shuffled from one doctor to the next litterally, and I mean litterally writing me anything I had looked up in my PDA and had wanted to try. Luckily I got out of there and found the best pain specialist in the world, now I am on Roxicodone 30mg x5 daily and Opana ER 30mg x2 daily, my doctor used an intrathecal pain pump to slowly increase one dosage and back me off the others for 2-3years.  I then decided I wanted to start over so we worked up to what I am on now. It takes A LOT of doctors to find that great one, trust me! I have been through it all and back again and its not fair and I dont know why nice people have to hurt but we live it every single day, good luck and godspeed.

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ICpain70, Community Member
3/27/10 10:39pm

i'm happy for you!! i pray to god in heaven that i will be able to find a doc like you have. i hurt so much and i just want it to stop. i would give anything to find a doc who isn't afraid to use pain meds. i get treated like it is my fault i need pain meds. glad you have a good one - gives me hope!!

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Karen Marks, Community Member
4/ 9/10 6:44pm

You are so lucky, I am 30 and have had chronic pain for almost six years now. Because of a naturally high tolerance to opaites, no doctor will help me, so I had to drop out of university become a criminal and self medicate. I have tryed many times going to pian management centers and now that I have self medicated it iseven harded to find a doctor , Everyday I feel like I dont want to be on this planet anymore. I have spent 100,000's on this. Dont know what to do anymore, Does your doc have any collelues in CAlifornia, would you give up your doc name?  my email is kare74@care2.com if you want to talk and see how much I need some help. I am glad that you are being helped

 

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Brooklyn, Community Member
4/ 9/12 2:56pm

Hi,

  I was in a very bad car accident and I suffer from chronic pain every day as well. I have 3 herniated disks in my back as well as sclerosis, I had 3 reconstructive surgeries in the past 2 years, and I've been referred to numerous pain management doctors, but all of them do not have solutions for me. What state do you live in? I'm in New Jersey and have been to New Jersey and New York, and have yet to find a reliable pain management specialist that HELPS me. If you could please refer me to your doctor I'd really appreciate it.

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Steph, Community Member
4/10/14 4:16pm
My name is Steph and have been going to ASAP in Vineland for almost 9 yrs. My insurance has changed and after being there so long they will no longer see me and treat my pain due to my insurance. Now I'm no longer getting help for my pain and I would love to know if you would share what dr you are seeing that's helping u with your pain. That's even if they take my insurance. It would be greatly appreciate. More than you know! Plz help this is my last resource. Thank you in advance if you can! Steph from Vineland! Reply
bspondre, Community Member
12/ 4/09 8:20pm

I have been taking roxicodone, clonozopane, and soma for pain, I had 2 cervical disks fused and the one above is getting so bad , I am close to needing another fusion, I dont want to do this untill it is inevidable, the first time I waited 2 years and was taking meds and epidaurals, I finally had to get the fusion done because I was basically paralyzed in both hands and the pain was insane, I have to talk to someone in the same situation because I dont know what to do next. My Neurosurgeon told me cause I have so many bad disks, it will be one after another, I am only 47, I thought the roxicodone was working pretty well, with not to many side effects, I told my pain doctor that I had taken a few extra one week because I couldnt bear the pain, well he didnt like that and said I did not comply and took me off them and gave me methadone, 2 10mg 3 times a day. Well I had gotten the worse side effects, including severe constipation, drowsy to the point I couldnt get out of bed, and I had such a nasty taste in my mouth. I was also diagnosed with severe carpal tunnel, by taking an emg test. I cant feel nothing in both hands in the morning and it takes me a few hours for the feeling to come to me. I know there are people out there that have been dealing with this kind of stuff for many years, I only been dealing with this severity for a few months and I need some good feedback. I am currently fighting social security for disability, and would like to know what other meds are good to try. I thought I was doing pretty well on the roxys but he is afraid to give them to me long term because I had a coke addiction back in the 80's, but never had a problem with mental addiction to any pills. The doctors are so paranoid these days due the abuse of the opiates, I had a coke issue in the 80's , never had a pill problem, my pain management doctor is giving me meds but is making me take random drug screens and is watching me like a hawk, ask your dr if he can give you a relatively low dose and you will comply to all their rules.  

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meagan1978, Community Member
12/ 5/09 4:55am

well thats the issue is that when I ask they immediatly lable me a pill seeker.... so I just tell them my symptoms, tests I have had and meds I have tried.. when they ask me what happens when I take norco I breath a sigh of relief then tell them that it works well and I get an uh hm and send me on my way.  I am thankful that my pain isn't as bad as yours, yet anyways... I just need to keep looking for the right doctor... I am going to end up having to go out of the county I live in to get help.  I am blindly going to doctors that I hear are more easy going about med distribution.... I hear your frustration and totally get it and I am sorry for you but at least you are getting something.  I would suggest with the methadone that you maybe cut it down by one a day and see if you can get past the side effect issues.... just a thought... I know that for me, I have taken a couple of my friends before (i know a big no no.. you cant be fully honest with your doctors and thats too bad) and they seemed to work very well and i had to take a lot less than the vicodin i have been prescribed in the past (the very distant past and it wasnt enough by far).... lets keep in touch and  will try your suggestion and keep you posted.... the only other advice i have for you is if you end up switching doctors dont tell him about your drug habit from the past.. it has been so long ago and if you are being watched, and any doctor would make you sign an agreement and watch you within reason anyways, so you dont need to add to their paranoia... ive never had any drug issues either but ive done my fair share of drinking and i dont tell anyone that because it isnt an issue anymore and i would just make doctor's attitudes towards me worse.....  :)  so let me know if you find anything new out... i will say a prayer for you, i know what i live with is hard but yours seems way worse..... i am going to look into roxycodone, i have never heard of it before.

 

Keep your chin up!!!!  If I can do it you can do it :)

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MZHONEYDANIELS, Community Member
12/ 5/09 7:15am

hi im sorri to hear about this situation 4 u however im doing the same as far a stressin i been in chronic pain 2 years from lymphadema heriditary and an accident in 2008 to my lower back i seen one pain management doctor who prescribed oxy, percocet,sulindic flexoril and zanax for my anxiety a nd i was getting injections all this with medicaid now im gettin concerned because this docor is discontinuing medicaid what can i do where can i go?i found her by accident and my family docotor doesnt like to gived off meds out ike that i never had a drug problem im afraid of losing out anyone have suggestions i live in nj i dont want to buy things off the street....

also i was a participant yearly for the ft lauderdale aids walk last year i did it but barely made it to the finish line without crawling and being dragged off im going for it again but hope im on stable pain meds i need em!so i guess my question is anybody know a doctor in newark or surrounding area this is pathetic also god willing i can do the ft lauderdale aids  walk in success that i do for my dead brother and best friend to pay tribute if u like to support me go to the site and plug my name in make a donation i appreciate it for 2010 victory smile...i hope someone can answer this i appreciate it.mzhoneydaniels

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meagan1978, Community Member
12/28/09 4:01pm

well just be thankful you have the meds now.. i have nothing

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O Baby 8, Community Member
8/ 3/11 9:06pm

I have tried so many of the narcotics, but with me I litertally loose my mind, CRS [can't remember shit-- around the household things, people, on one med I was so CRS that I forget how to use PC, phone, Cell, I couldn't  on remember events, or sense oout of the Church Service it was all Greek to me!] as my doc says!  Non-narcotic that I have tried make me dizzy and oh so drowsy at the drop of the hat!  So I can only use Arthritis Strength Tylenol [650mg], MSM 1500 mg twice daily from the Vitamin store.  I understand your body makes its own natural endorphins, but I don't know how that works.  I will try that next and find it!  There has to be an answer out there for my 8-9 pain count

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bspondre, Community Member
12/ 6/09 8:53pm

Thanks for the reply, it is good to share these things with people that understand the frustrations of true chronic pain. I think your right about not disclosing the past, but its a shame you cant tell your doctor the truth. If I was abusing the drugs I didnt have to tell him I took a few extra ones. Its really crazy out there. I am going to search for another Pain Dr. Does anyone know a dr that is patient friendly in the Clearwater, Florida area?

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ICpain70, Community Member
3/27/10 10:34pm

you live in FL. you ought to consider yourself lucky. i mean considering how things are.

if you're having trouble ... try a clinic in south florida!! there are many pay cash no insurance accepted but the docs due care that you're in pain. they get a lot of bad attention but at least these are docs who are holding their ground and fighting this war.

 

so if you're really suffering. go south! i'm stuck in maine. i just took my last pill and no longer have a doc. long story. but short of it - i disagreed w/him bout a couple things and now i am suffering. it's inhumane.

 

if you want someone who cares about how much pain you have try south florida.

best wishes.

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O Baby 8, Community Member
8/ 3/11 9:23pm

I am on L&I and SSI and it always,  takes 3 times of rejection minimum!  Take my advice and find a good lawyer pronto!  He takes 30 % from each check you get.  With my L&I case [ I was a nurse] and SSI it took me two years  and they will put you through helll.   We were living on my husbands minimal wages alone.   I got the advise from fellow nurses also injured and friends, here and CANADA.  Search around and get your own answers.  I am with you!

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Ihurtallthetime86, Community Member
1/18/10 10:37pm

I am in pain constantly due to complications of a compression fracture in the L1... I have tons of problems and am hurting right now. I just took 3200 mg of ibprofen because I can't get any help from anywhere. I have no insurance nor much money... The only answer I see is to do what everyone tells you is "bad"... Go to Florida and go to one of their pain clinics and they will give you plenty of pain meds. Nerve meds and muscle relaxers... Now it sounds bad. But is it... We are in pain! The Dr's are bad if they give it to people who don't need it and they know. If they can't fix the problem they should treat the symptoms. Waking up to pain everyday makes you want to blow your brains out. Don't suffer... I haven't went and got "treatment" yet.. It costs roughly $800 for all of it. They give enough pain meds to last a couple or even a few months. More a suggestion than an answer. But it's a good suggestion.

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meagan1978, Community Member
1/19/10 4:58pm

yeah, insurance is a blessing and a curse for me... florida huh?  im in cali and havent got a lot of money either so i think ill look into somehwhere closer... but thanks for the tip you never know, i might be able to get out there.... at least you know whats causing your pain and have some meds... i suffer 24/7 and get nothing... not even ib profin... they just look at me like im some kindof junkie if i ask for any relief, and i dont look like a druggie, im very clean cut and healthy looking other than walking like an old person at only 31... its really frustrating!!  i feel for you though not having ins or money... that has got to be rough... can u save for the treatments?  its hard to save today though.... so much has to go to bills and then there isnt much left over to save...  well i hope you get things figured out and get a good doctor that doesnt cost you an arm and a leg!  Good luck :)

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My3tzubabies, Community Member
7/28/11 7:06am
Same here on the lack of REAL pain mgmt docs willing to treat chronic pain patients. Hello, would we be coming to someone labeled to "manage" pain if it wasn't a long term problem? My doctor of 4 yrs freaked out on the new scrutinies being conducted toward pn mgmt docs and pretty much dismissed all his chronic patients, me included. Ok swell, so calling around equals no doc wanting to accept all your baggage! What can we all do to change the situation? There's got to be someone in our congressional system that can help fight for our rights. Reply
meagan1978, Community Member
7/28/11 12:25pm

its so freaking frustrating, and i am a little nervous to put this out there  but the lack of help leaves me no choice but to buy from the people that get their meds just to sell... its backwards, and most of them look like they have a meth habit or something and can still get pain killers and yet im a mom of two, always clean, no drug use ever and they think Im after some kind of high.. i wouldnt even know where to start with getting a patients advocate anywhere, but if u find something out please let me know,, id rather be functionable legally

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My3tzubabies, Community Member
7/28/11 5:14pm
Agreed almost ready to go that route and feel the same. Spent 3 hours this afternoon calling doctor after doctor trying to find a new pain mgmt physician. No we don't give meds, no we don't accept new patients, no we don't treat that. How frustrating!!! Reply
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By meagan1978, Community Member— Last Modified: 05/03/14, First Published: 11/30/09