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Posted 6/25/2011 5:00 AM (GMT 0)
I am a new member(as of 2day) & I am at my wits end.My Dr.(of 12 yrs.)fired me because I got into an arguement with his nurse
over pain meds.The problem?He would only give me Ultram.For me,it's like taking a sugar pill.Now after 12 yrs, I have no PCP.I was
on Darvoset 4 over 7 yrs.till they jerked it off the market.No warning at all 4 those of us who did just fine on it.Now I cannot find a
Dr.who will give me anything at all.I am on disability for several Chronic Illiness including Fibromygia.My PCP is the one who diagnosed
it & sent me 2 the pain clinic where I went for those 7 yrs.My husband had a heart attack last yr.so I asked my Dr.if he'd take over
my pain mgmt.and he agreed snce I was only on the Darvoset & Ultram.Everything was fine till they pulled it.I went back 2 the pain
clinic where I'd been a "very good pt."4 all those yrs.& they informed me they "no longer"give pain meds for FM.I was treated like some
sort of drug addict simply 4 asking 4 help.I left there n tears! I need a doctor who understands & will help me.I am very careful with my
meds & I never abused them.I live in N.C. & will go out of my county 2 get help.The pain clinic Dr.sent me to another Dr.in Charlotte who
"supposedly"treats chronic pain & would help me.What a joke! I arrived at 1:30.They made me wait 3 & a half hrs.I didn't get back home
till 7pm! Know what he told me? He said(and I quote)if u will lose weight,or go back 2 work part-time,or volunteer somewhere 4 at least
2 hrs.a day; I'll give u the pain meds u need.Medical blackmail? Yes.No doctor(or anyone else)has the right to hold getting help 4 ur pain
over ur head by requiring u 2 do what "they"think u should do!! I've been on disability 4 over 10 yrs.& he wanted me 2 go back 2 work! If
I could work,I would b working.Can anyone recommend a good Dr. who will help me with my pain?If I don't get some help;I don't know how
I will manage.Please help if u can! Blessings 2 all & thanks!

I gave your thread a topic!!!  Hugs, Karen...

Post Edited By Moderator (getting by) : 6/25/2011 10:02:29 AM (GMT-6)

Posted 6/25/2011 3:34 PM (GMT 0)
Hi

Welcome to the forum. It sounds like you're going through a frustrating time. It is a nightmare having to wait ages at the clinics or dr's waiting rooms - why do they never have comfy chairs?

I can't offer dr recommendations as i live along way away from you but good luck - I hope you get the help you need.

Chocchip

Ps there are lots of good resources information in the Fibro 101 thread.
Posted 6/25/2011 3:49 PM (GMT 0)
Dear FM

You are lucky you live in charlotte where there are many options. First, call around for new PCP and make sure they treat fibro(or at least believe its real) It may take a couple of visits before you build a level of trust. On yr 1st visit, explain symptoms but DO NOT mention problems w/ past PCP. They will lable you a drug-seeker right away. Tell him ultram does not work and no darvocet on market...see what happens...many PCP are very reluctant to prescribe too many painkillers. Their names will pop up on a federal database and they may be investigated. Maybe new doc can give you 1 month and refer to another pain clinic. Every pain doc I ever went to I had to wait hours, b/c there are so many patients and drug seekers and so few physicians willing to practice pain maqnagement. The government is all up in their business. So, I'm afraid you have to deal with it.

Myself, I took myself off pain meds because I was badly addicted to them, and I know now I can live without them. But, it takes alot of guts, heating pads, billions of Motrin, prayer exercise and vitamins. The pain clinics just starting treating us with contempt, like all of us were faking it...staffs are usually pretty rude.

Well, I hope you can find some new docs soon -let us know-take care

Maggie
Posted 6/25/2011 4:00 PM (GMT 0)
Hi there and welcome to the forum. You need to find a good doc that believes in fm. I would ask around. Call places close to you, explain your situation and see what happens. I am sorry you are in this situation. I know it is hard. I take norco and am happy with that. No reason to ask for anything stronger, other than I am still in pain. But I can live with a 3 or a 4 on the pain scale. But when it gets up there higher, watch out. I can't handle that.

As was recommended by Chocchip, do read the thread fibro101. There are many things that you can do to relieve pain that aren't necessarily medications. Walking, stretching and other things. I personally meditate and it helps relieve the tension in my muscles and that helps. I also walk daily. Not a lot, but enough to help. I switched from soda to lemon water and that really helps to lose weight. It is helping me anyway. And the more weight I get off, the better I feel. I am still overweight, but getting there.

I also use something called a bed buddy. It is a long tube made of fabric, filled with rice or beans. You heat them in the microwave and then wrap them in a towel and put around your neck. The moist heat really helps. I love them, I have two. They are nice in the wintertime especially.

I really hope that you feel better and find a doctor near you that will help you. I would of told the doc, yes I will volunteer, but give me my painpills first. Maybe then you would have the strength and energy to volunteer somewhere. But don't mess up the disability by trying to work, unless you feel you can. I worked a part time job two summers ago, loved it. But I quit when winter came. Wish I could go back, but if I did, we would be making too much money for my husband to get his health insurance. So they got you between a rock and a hard place. But I loved every minute of it. It was fun.

Take care, keep posting.

Hugs, Karen
Posted 6/25/2011 4:17 PM (GMT 0)
Hi, FM Suffer, and welcome!  I'm so glad you found us and joined in!  I'm sorry you are going through this but you are not the only one!  We've had quite a few having to deal with this issue. 

 

Many on this forum use a rheumatologist for their doctor.  I use a board certified Internist for my FM and everything else I have. 

 

In Fibro 101, there is a link called Finding a Fibro Doctor.  Since you mentioned Charlotte, I clicked on North Carolina and there are two that it suggests.  You might want to check that out.  Fibro 101 is the second thread on the forum and it's loaded with good info to help you understand your illness.

 

I'm looking forward to getting to know you.  Don't hesitate to ask questions because we are here to help you.  Please let us know if you do find a good doctor because we really do care about you.  I hope to hear more from you soon.

 

Sherrine

 

 

Posted 6/25/2011 11:26 PM (GMT 0)
Thank you to all who posted a reply.I really do appreciate all the kind words & info. I am just sooo tired of fighting
with doctors & the pain.I have days when I just don't have the strength to do it.And I don't have any support so
that's why I am thankful 4 u all ! My husband tries 2 understand but he has a hard time.He wants 2 help but doesn't
know how.And he's very angry at the treatment I've been given by the Drs.& so am I. But I do want 2 ask something
of those who live in NC 2 do something.I sent Senator Burr an e-mail message yesterday & told him that this issue of
Drs. not wanting 2 Treat our chronic pain was a really big problem & needed 2 b addressed.I commented that the DEA
needs 2 b going after illegal drug dealers & not the doctors who r really trying 2 help us but r afraid 2 do it 4 fear of
losing their practice.I think all of us should send our Congressmen & senators a message about this urgent matter.One
person can't do alot but if we band together, maybe we can change the way things r & help someone else down the road.
However, I still need a doctor & I do not have any idea of where 2 start.Charlotte is a big city & I really don't want 2 go 2
anymore drs.connected with CMC. Counting my previous PCP, I've gone to 4 different Drs.& gotten help from none of them.
If I keep taking as much over the counter meds as I have been, I'm gonna end up with an ulcer.And they don't help at that.
But I take them anyway.Don't have a choice.I'll go 2 the FM101 & check it out.In the meantime; if anyone lives within decent
driving time of me & can suggest a Dr. please contact me.I can't keep going from Dr.2 Dr. If I do that, I will b labeled 4 sure!
Thanks 2 all 4 listening !!
Posted 6/26/2011 2:47 AM (GMT 0)
There were several doctors listed in Fibro 101.  Check it out.  Maybe one of them would work for you.

 

Sherrine

Posted 6/26/2011 1:48 PM (GMT 0)
I went 2 Dr.Lapp not 2 long after being diagnosed.He was wonderful then & took insurance.Now he
doesn't.You have 2 pay up front & file yourself.Hie visits r over $300. Who can afford that now a days?
I sure can't. There were only 2 that I saw & I've never been 2 the other one. (In NC anyway).
Posted 6/26/2011 5:52 PM (GMT 0)
If you are seriously interested in traveling - Florida has the best pain clinics. All you have to do is cross the border and there are billboards for them. I know there is slowly new legislation being put into place, but people seem to have a very easy time getting what they want. You may want to look into this option if you really can't get what you need.

But I should add that they probably will not monitor you so you need to make sure you are aware of side effects etc.
Posted 6/26/2011 11:27 PM (GMT 0)
Thanks Beachgirl but traveling that far would b out of the question. Can't afford it. I'd like 2 ask if anyone
posts here that lives in N.C. that could help me? Anyone at all?
Posted 6/27/2011 12:35 AM (GMT 0)
Evening FM friends! Please say a little prayer 4 me this evening. Hav had a horrible day 2day! Pain all over &
everywhere! Taken OTC q 4 hrs. with no success! Spent most of my day n bed. I feel like someone has my body
in a vise and is squeezing the heck out of me! Hurts & I see no help or end in sight. UHG!!!!!!!
Posted 6/27/2011 2:27 AM (GMT 0)
Are you able to take Tylenol and Advil? When I'm having a bad day, I will take both. This may sound stupid, but I had no idea that you could take them at the same time. Tylenol you would follow the dosing instructions, but I know with advil you can take 1-2 more than on the bottle. You would need to look that up online, as I don't know how long between each dose.

I know for me, sometimes the only thing that helps is a heating pad.

I hope you start feeling better!!!
Posted 6/27/2011 3:48 AM (GMT 0)
I guess I could try that.But I'm already having stomach pain so my GYN is going to do an ultrasound to make sure everything
is n it's place.And if it's not; she's gonna send me 2 a Gastro doctor.Alot of u r listing meds that I have never heard of and don't
know what they r 4.Like I said n a previous post; not counting my PCP; I've gone to 4 different doctors n 6 months and not one
did anything or gave me any meds.I know my body better than anyone,right? And if I tell them I can't take something, why don't
they believe me? They just shrugged their shoulders like oh well, we can't do anything 4 u: so goodbye.I got a reply from one of us
who said I was lucky 2 b living n Charlotte.well, I don't feel lucky.I feel very angry & confused.It sounds like most of u (not all) live
where your doctors rnot afraid 2 give u ur meds or try new ones. It's not like that here.all the chronic doctors have banded with
one another & will not help those of us who don't have labs or x-rays 2 back our pain up with.So what do I do? Sit down with a ph.
book & start calling doctor offices? Won't that really make me look like a nut? And besides; I was already sent to 2 different doctors
by other drs. who said they'd b able 2 help me and they did nothing.No help & no meds! I never thought I'd see the day when I could
not get help with my pain.I always thought I'd have my Darvoset 2 take.Then one day; gone.No warning, no replacement med, no
nothing 2 take n it's place. So everyday the pain gets worse. I put a post asking if there is anyone near me in NC who could give me
a name of who 2 try, but I've gotten no response.Maybe they're afraid 2 say.It looks like I may have 2 go outside my county 2 get
help.I don't know.I do know I'm losing trust in the medical profession really fast!! Never thought the day would come in America where
doctors wouldn't listen 2 us or help us! Sad.Thanks 4 listening all !! :(
Posted 6/27/2011 5:49 PM (GMT 0)
What are your main symptoms? Is it just all over pain? Or are you having stomach related issues?
Posted 6/27/2011 7:00 PM (GMT 0)
Dear Fm

Do you have any back problems? That got me into a pain clinic. Do you have definitive (like, written down) diagnosis? Go to a Rheumatologist, they may be able to help. Call first and see if they treat fibro patients.

I understand yr frustration over pain meds.I was taking 3 hydros perday thru pain clinic. I developed an extremely bad kidney infection and fam. doc gave me a few hydros. The Pain clinic called and threw me out, they also notified all pharmacies in the area, so they all look at me like I'm making meth in my car trunk or something-lol!! So, now I go without pain meds except motrin and muscle relaxer....it is hard but they don't control me anymore. I was being a victim and now I'm not. Fam doc gives me prn hydros every other month-law will not allow him to write a monthly script.

Anyway, try not to get wrought up it makes the pain worse. Good luck

Maggie
Posted 6/27/2011 10:34 PM (GMT 0)
Dear Beach & Bayou: My pain is all over, everywhere all the time.Sometimes I have sharp shooting pains so bad it
makes me want 2 yell out.But i've learned 2 just catch my breath instead so I won't "scare"my family. I've been on
disability 4 over 19 yrs. FMS was diagnosed by my PCP over 10 yrs.ago.He sent me 2 a pain clinic where I stayed 4
around 7 & a half yrs. They put me on pain patches.Couldn't use them; made me sick.Put me on Methodone 4 awhile
didn't help.Wanted 2 give me morphine.I said no.I stayed at the pain clinic till my husband had a heart attack last yr.
I was able 2 convince my PCP 2 take over my pain mgmt. since Darvoset was all I was taking at the time.I took the
Darvost till they pulled it off the market last yr.(with no warning I might add)and that when it all fell apart 4 me.I do
have back pain but no x-rays or any documentation 2 show 4 it.Like I said b4; I went back 2 the pain clinic about 4 wks.
ago with no luck.They told me they no longer give "pain" meds 4 FM. For me 2 take the protocol meds they now give 4
the FM which r: Cymbalta, Lycria & Sevilla. I tried all three.Can't take any of them.Horrible side effects.I take every OTC
med u can name.Aleve, tylenol, Motrin,Excedrin Back & Body & Excedrin Migraine.The only one I don't take is aspirin.And
that's not counting my prescription meds.Nothing seems 2 help.I know there just has 2 b someone reading my posts that
lives in NC and knows someone who can help me! Is anyone out there listening 2 me or am I all alone like I feel? I can't just
jump from one Dr. 2 another.Can't afford it.Not 2 mention the label I'd get put on me by doing that.Right now I'm throbbing!
If i had a magic wand; I could wave this away.Oh well; maybe one of u will take pity on me & help me locate a doctor?
Blessings 2 all !!!!!!
Posted 6/27/2011 10:48 PM (GMT 0)
Get your butt to a rheumatologist-he can prescribe whatever the h*** he wants!!

Maggie
Posted 6/27/2011 11:10 PM (GMT 0)
My dear Maggie: I took my "butt" 2 a Rheumy over 2 months ago.She told me right off the bat that she "does not"
prescribe any narcotic type pain meds. She ordered labwork & I sent a copy 2 her with the results.Never heard a
word back from her.And I still don't know what those labs mean.SOOOOOOOO........... anymore suggestions?
Posted 6/28/2011 1:10 AM (GMT 0)
Do you have the labs with you? Maybe you could post them and we could all try and interpret them. Lord knows I've had my fair share of blood work done :-)

Anyhow, have you tried a new Dr. and withheld the fact that you have Fibro? Many Drs. will not treat this. You could simply say you are having pain, and were previously on a medication that was allowing you to live your life normally.

Also be careful with the over the counter pain killers. If you are having stomach issues, advil can make it worse.

The other suggestion I have is to make a symptoms list. When this first began, what was happening. This may help you clearly tell your Dr. what is going on instead of just saying you need pain medication.
Posted 6/28/2011 1:57 AM (GMT 0)
I don't have them in front of me but I will find them & post tomorrow.Thanks.And when I find another Dr.(if I ever do) I
won't mention FM unless he brings it up?Thanks Beachgirl !
Posted 6/28/2011 3:31 PM (GMT 0)
Good Morning BeachGirl: Ok: Here r the labs (I do have).Lyme test run.It was negative. ANA Screen (IFA ?) Positive @ 1:40.
Rheumatoid was 11: so that was negative.Stated Homogeneous was out of range.(Don't know what that is?) Also tested
positive 4 the "Ace Gene deletion variant". Supposedly this gene puts me at a high risk for Hypertension & coronary artery
disease. I also read over the copies of my doctors notes from my PCP & the Pain Clinic.Said I had "Intractable Pain (?). And
something else called: Hyperlipidemia". Don't know what that is either.Looks like I need 2 do some researching! Thanks & hope
ur day is going well ! :)
Posted 6/28/2011 4:16 PM (GMT 0)
Dear FM

So sorry about yr rheumy fiasco.

Hyperlipidemia means that bad cholesterol is high.

Intractable pain means (I think) pain that they cannot determine its origin and does not respond to normal pain meds at all. In other words, they don't know what to do for you. I'm very sorry.
We do have several folks here with intractable pain...maybe they could chime in

Take care dear

Maggie
Posted 6/28/2011 7:20 PM (GMT 0)
I may have some good news everybody! I received an e-mail reply from someone I contacted thru the F.M.Assoc. They've given
me the name of a doctor in Mint Hill, NC. I'm told this doctor is very caring & very good.Soooooo..... here I go again.Another Dr. 2
try.I'm gonna make an appt.(if they'll take Medicare)and I will keep all of u posted as 2 when I get n & how it goes.Trying not 2 get
excited but I've had such a hard time, it's hard not 2.Wish me luck!! :)
Posted 6/29/2011 5:13 AM (GMT 0)
FM Sufferer, I've been diagnosed with CFS, FMS, osteoarthritis, and possibly degenerative bone disease. Through these amazing people on this forum particularly bayoub2 and darnelle( sorry if I typed that wrong :/) But I really believe I have I.P. which as stated above is intractible pain. like I said before I was put on 120 10 mg roxycodone every month a year and 2 months ago and even at first it didint relieve me of all my pain, I have just had to make due with what I have been given. That's another reason why I believe I have I.P. is because as far as I know what I have is fairly strong and it doesn't really help that well especially now. From what I've read people with I.P. need much higher dosages or strengths of opiates that people who don't have it.....But in my case I'm 21 so it's almost impossible to get anything more. However My rheumatologist was going to put me on a new opiate nucynta, but somehow managed to forget lol. My appointment is tom. but my rheumatologist is on vacation so I will be seeing a P.A. who I've never even seen before....not looking forward to it to be honest, Hopefully she understands and will not view me as just a druggy or whatever. But as far as I know she can only write me the same exact thing as my rheumatologist has been if I'm not correct??...But my next appointment after that with my rheumatologist I am going to ask him to possibly put me on opana 10mg E.R. with the oxycodone....I've heard good things about opana e.r. and heard it last up to 12 hours. When I was 20 he wanted to put me on a free test trial of Embedda which is a new morphine product, but the age limit was 21...since I turned 21 he hasn't brought that back up again. I know opana is oxymorphone ( oxycodone and morphine combined) So hopefully he will atleast let me try it and hopefully between the long lasting opiate and the roxycodone that will better controll my pain. Also FM Sufferer I really wish you the best for your Mint Hill voyage, hopefully it works out for you. Keep in touch and let me know how that goes and the further more we talk the more comfortable I will be with giving you my dr.s.....I feel your pain.....

Post Edited (OUCH9030) : 6/28/2011 11:16:39 PM (GMT-6)

Posted 6/29/2011 2:02 PM (GMT 0)
Dear "Ouch" (Luv ur handle name!Says it all,right?) Anyway, thank u so much 4 ur post. I'm not sure where u live but
here where I am, you can't get any of the meds you mentioned unless you have major back pain or u can produce x-rays
or some type of tests 2 back up that u need the meds.Charlotte is a big city but the physicians here r clueless as 2 how
2 treat FM & all the other illnesses that go along with the FM.I've been 2 a Rhuemy, a pain clinic, my PCP, & a chronic pain
dr. & none of them would help me.I'm sooo scared 2 try another Dr.because I've been treated so badly.But I guess I don't
have any choice.If I don't try, I'll never know,right? It rained here last night & 2day I am n so much pain that I had 2 take
one of my husband's pain pills with tylenol. Hopefully that will at least cut the edge. Since I am fairly new on this forum, I'm
not sure how it works if u want to contact a fellow Fmer directly.I have my e-mail listed but I don't know if fellow posters can
access it or not.Anyway; I'm gonna call this Dr. in Mint Hill 2day.I will let u know what they say. I hope ur visit with the P.A.
goes well. I always wondered why all the meds they tried on me never worked that well.Now I understand it better.Intrackable
pain is harder 2 manage.Too bad the doctors aren't smart enough 2 fiqure that out.Why won't they listen 2 us? I am sooo glad
u have ones that do hear u ! I'll touch base later 2day.Let's keep n touch,ok? I could use a friend right now.Blessings!
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