New and in pain!!

Hi All,

I am 51 years old and usually psot on the fibro board.

I was diagnosed with fibromyalgia in Feb of 09 although the pain and fatigue came on in July of 08 after having a hysterectomy. 

The Rheumotologist who diagnosed me said that I should be fine with the meds I am on - (Lexapro for severe panic disorder) and didn't recommend that I change or take anything else.  He did give me a scrip for 10 hydrocodone per month.  At first, I never took them but then I started to be in much more pain and used the 10 per month.  After a few months, he decided that he didn't want me to take them anymore so he jsut stopped precribing them. 

I went to my primary and she was very understanding.  She knows that I am not abusing them and she gave me a scrip for 2 per day and Zanaflex at bedtime.  My scrips were lasting almost 2 months because I never take them while I'm at work.  Well, then she went on early maternity leave and I was completely cut off.  The doctors at the practice wouldn't prescribe anything for me and asked if I would see a new rhemotologist.  Fine, I went to see her and she basically told me that fibor is all psychological!  Is this woman really a doctor or did she just wak off the street into the office that day?  She then told me I should take Savella.  When I called my psychiatrist, he said that I could not take it as it could interact badly with my other meds.  Forty bucks of a copay down the drain there.

Then I called the primary's office again, just asking for any help.  They set me up with a new rheumotologist - the appt was over a month away!  I asked them if they could give me anything for pain and they said no.

Then I became desperate - I actually went to the ER because I didn't know where to turn, the doctors I had access to wouldn't help me!  Well, big mistake.  The docotr there basically made a predetermination of me before she saw me and came in yelling at me, telling me that I was on too much medication, that I had access to other doctors, why was I wasting ER time, etc.  She made me feel like a piece of crap!  I tried to explain to her what was going on and she acted like I was some sort of junkie.  It was so demeaning.  Finally, she called the practice and foudn out that all of my doctor's patients who had been prescribed narcotics had been cut-ff and that the doctors at that practice "did not want anyone there that suffered from chronic pain"  - seriously?  You don't want to help sick people?  Then why are you a doctor?

Since then, I have found a new primary.  She didn't prescribe hydrocodone either but she knows I have the appt with my new rheum.  She did mention that she's not even sure that the fibro diagnosis was right.  She thinks I might have polymyalgia rheumatica.  At least she listened to me and did prescribe my Zanaflex.

Anyway - my appt with my new rheumotologist is now Wednesday and I can't wait.  I hope I'm not disappointed and that he is able to help me.

Oh, and by the way, I wrote a letter to the ER about the way that doctor behaved towards me and got a call from the head of ER Friday.  HE was awesome and he told me that he was going to talk to her about it and that he doesn't expect that she will ever treat someone that way again.

Sorry to go on and on and thanks for listening to me!

Suzanne

Hi Suzanne.  Welcome to the forum.  I'm sorry that you've been treated so bad by the doctors.  I hope your appointment on Wednesday goes well.

 

hugs

Loretta

Hi Suzanne and welcome to this great forum! I was diagnosed with RSD last April. I took Lyrica for months-little relief and big cost. I stopped going to the pain mgt. dr. Once he had me drug tested (urine) and I had to pay for it! Now I'm taking Gabapentin and Savella-with great results. I know some people that take Lyrica and they're happy with it. I hope you're feeling better. It seems lik,e almost all of us (at one time or another) have had to deal with CRUMMY doctors! I hope that you find one as caring as mine (he's an internist). Take care, Donna

Hi Suzanne and welcome to the CP forum. Glad you came over to check us out. I am so sorry to hear of all the misery you have been dealt by the primary care drs, but you know what happened with you is becoming more and more prevalent. PCP's do not want to give patients any kind of pain medications period, it does not matter what its for either. My pain mgt dr told me a year ago, that the DEA is busting more PCPC for rxing pain meds than they are PM drs. She said the reason is they keep sloppy records due to laziness and staff not knowing any better. She says she see's this first hand because she insists the patients records be sent to her to review beforwe she even gives a new patient an appt. She said the records from the PCP's is unbelievable and they deserve to get their hands slapped. She said instead of them sticking their heads in the sand they should listen to what the the DEA can tell them on how to do proper records keeping, she says she has used many of their recommendations in her practice and she is not intimidated either by the visits. I am in Tx and this is pretty much how things are around here. I know a few people here on the forum are lucky enough that their PCP handles their pain meds but that is far and few in between. Most of us here would tell you if you took a poll, that no, we do not go to the ER's for the reason of how you were treated. Those folks need to go back to charm school obviously they flunked that too.

 

I do hope your appt goes well with the new rheumy. It is so hard to get good medical care these days. You will find that you have to advocate more and more to get the help you need and deserve. I fear it is only going to get worse too. If this appt craps out, go to plan B and keep trying till you find a dr that will listen to you and take interest and want to help. So many these days are missing those key elements, but don't give up, keep at it till you find the right one, this is not uncommon anymore.

 

I am glad that you sent a letter to the administrator of the hospital. I do think a lot of people just don't want to take the time to sit down and write a letter but it should be done. If for no other reason to let them know what crappy treatment was rendered. Take care and let us know how the appt goes. 

Oh, thank you all for such a warm welcome!

I am so looking forward to my appt tomorrow but I fear that I am hanging too much hope on this appt. I just don't want to be disappointed again. I have a good feeling about this doctor as he is a little bit older so maybe he knows a little more than that 14 year old rheumy I went to before!

Straydog - I have heard so much about the FDA and pain meds lately. One of my friends is having issues because she does have a substance abuse history but she has one leg shorter than the other and her back is all messed up so she needs to take something. She finally found a doctor who was willing to prescribe but he stopped because the FDA is watching him. He told her that soon, people won't be able to get pain meds anymore. Hope it's not coming to that. I never even took any aspirin till I was 28 years old and when I had a breast reduction 10 years ago, the doctor gave me vicodin, I took a half and didn't like it so I just took ibubrofin and I was fine.

It's so different now for me, somedays, I NEED that hydrocodone. My sister, who has a much more debilitating form of fibro, takes lortab every day - 20 mg 3-4 times a day and she's till in pain, she also takes Cymbalta.

Golitho, I had a partial hysterectomy in the Summer of 2007 and then my ovaries and adhesions removed in July of 2008. I then developed, what they thought was an infection, high fever, incisions inflamed and oozing (sorry, gross!) so they put me in the hospital on heavy iv antibiotics. It was then that I developed the pains from my pelvic area into the front of my thighs. It turned out that I did not have an infection at all but the pain has just gotten worse and worse since then. Moving up into my arms, shoulders, clavical and the fatigue is beyond anything I have ever known. I believe that the surgery caused a trauma to my body which set this, whatever it is, into motion.

Anyway - thanks again to everyone and I'll keep you updated on my appt! Keep you fingers crossed (if it doesn't hurt too much!)

Suzanne

Thanks Deb - I'm so new to this - is your pain doctor at a pain clinic? I checked out my local pain clinic and it doesn't look like they deal with fibro and such. Of course I just looked at it online - I should call after my appt tomorrow.

It's the copays that kill me. My husband hasn't been able to work as he broke is neck in a car accident on March 4th so we aren't doing the best financially. It seems that everything is going wrong as well - we had to get a new car starter (luckily a friend put it in so we only had to pay for the starter) - then we ran out of oil - got the furnace started - got oil - $300.00 later - burner dies on us so no hot water or heat and it was 34 degrees this morning! So today, the guy came to fix the burner - $98.00 later...and so it goes! I'm trying to have a oisitive attitude but it's pretty hard! The good thing is that my husband is doing very well, no paralysis which is a miracle considering his injury!

His main office is at Luthern Hospital in Indiana.Yor problems sound like ours car had to be fix 600 for that shower had no water coming out guy only charged 72 for that ,property taxes due,but we made threw glad hubby is better hang in there and have a good day Deb

Hello,

Welcome Suz,

Ohhh every time I read something like this about the doctors, I got so mad and sad for the person writing this. My gosh, I just don't understand how someone can say that if you have Fibro you don't need narcotics. First of all, it doesn't cure it of course, but if you have a broken arm or something that they can see, then its ok to prescribe meds. It's so hard for us to come to the doctors and ask for pain medication, that in itself sometimes, can be just as hard as asking for help when you have no money. Do they think we want to have Fibro or any type of chronic pain? My guess is yeah, there are some people out there out to score some drugs, but I think that the majority of people that are in pain and need medication are for real. Things are just getting crazy, I started taking tylenol with codine about 10 years ago for my neck pain and headaches, my primary had no problem giving me scripts for medication. Then when I went to see my rhuemy for the first time, 3 years ago, she made me sign a contract saying I would not get narcotics from any other doctor, I remember going home and really funny about it, like that my doctor thought I was a druggie or something, then fast forward to this year, my rhuemy and I were having some communication issues, I went to a pain management doctor who said that he would not prescribe narcotic pain medication and that he "felt" that narcotics actually make you have more pain. He said I should do bio feedback therapy. I went back to my primary doctor telling her how much pain I was in and could she please manage my fibro and pain, she said no because they can't keep up with the new things going on with Fibro. She gave me those little pain patches lidoderm or whatever they are called. So I finally went back to my rhuemy on a bad day she took one look at me and said she would manage my pain from this point out and started my on oxy. I was scared to take it at first because all I knew about it was it is given to cancer patients. I was scared that if I ever had something like cancer, if I am on oxy now what the hell could they give me for pain then?? But I got over it and I am now managed pretty well with my pain, still need a little adjustment that hopefully will happen after my next visit. Sorry to sound off, I'm just mad and upset that they are giving you such a hard time. Makes me just want to scream. I sure hope that you continue to search for a doctor that will help you. Please don't give up, continue to search.

Good Luck and keep us posted.purple]

Hi Suzanne,

 

Well, I read how the appt went with the new rheumy. I will say this, I have had accupuncture before and it was  awesome and it worked for me. However, that is not to say it will work for you or someone else, you know we are all so different. Before I forget, did you tell this new dr your situation at home with a husband out of work because of a bad medical problem? Jeesh, sliding scale or not, money is money no matter how you look at it. That part does disturb me somewhat. Anyway, how I ended up doing accupuncture was  I had been in a car accident and injured my neck, pretty much a severe whiplash type injury. I was seeing an orthopedic for three months and went to PT 3 times a week for almost the same amount of time. I was given pain meds and muscle relaxers and sure the PT felt great while it was being done but an hour later I was back to square one, in severe pain. My sister came to the office one morning and I was crying I was in such pain and she said ok, this is enough, you need to try my dr who had been doing accupuncture on her for a bad neck for many years. She had been in 2 bad car accidents and needed neck surgery and by doing accupuncture she was able to hold off on surgery for many years. Now her dr did the traditional Chinese method with the very tiny thin needles and let me tell you first hand it was painless. The dr told me I should be able to tell a change by the 3rd session and if not then it was not going to work for me. By the 3rd session I could tell a difference because of how the pain was moving around. I ended doing 9 sessions and he had me totally pain free and on no medication what so ever.  He in fact took me off the pain meds and muscle relaxers right off the bat. I was so happy because he charged me back then in the early 80's $50 a visit and ins did not pay for this back then. He got me taken care of in much less time & money than the ortho did thats for sure. Now, I have had accupuncture many times since then for neck problems and it did not help, my dr said my neck was just too far gone and too bad of shape.

 

I do hope this works for you and you get some relief. I would sure let the new dr know if this does not help you. Its like someone else said, the drug seekers and drug abusers and such are the ones that has made it so difficult for people like you and me that have legitimate health conditions that warrant pain meds be able to obtain them. The Contracts, random UA's and pill counts that so many of the PM drs use it is just another CYA these drs come up with to make sure the patient is actually taking their medications and not selling them or whatever. But the bottom line is we are the ones that are made to feel like the criminal.

 

Please let us know how things go.

Suzanne it floors me how these drs act ignorant when you say "dr I am broke, I don't have the money to buy this or that", they act like you just stepped off of mars or something, Well, I suppose if we lived in thweir world we would not be concerned about money either. It just irked me this guy inisisting that you pull money out of your hat. I will give my PCP credit, one thing they do is load the patients up with samples. I take 3 different blood pressure medications and one is really expensive, I said look I can't afford it, he said yes you can because I will be giving you samples, 3 months worth at a time!! He also changed up one of breathing meds because he could keep me in the samples for it, so I am appreciative of this guy.

It is sad that you have to hoard the meds for the excruciating pain, jeesh, something wrong with this picture. I am sorry that you had to endure ER but now you know what happens 99% of the time if you go in complaining of pain. I don't know what happened with good medical care except its in the toilet and they act like they are doing you a real favor these days. Take care.

straydog - I love it! You are awesome! You are truly your own advocate and I love what you said to that doctor.

The first thing that the horrible ER Doctor said to me was, "You are on too many medications!" Well, really, thanks for telling me, I was unaware that I was spending my last dollar every month on prescriptions and that I take all those pills every day! Wish I had had the nerve to say that to her.

Take care of yourself!

Hi Suz...I used to get acupuncture. YES YES YES. I got very relaxed for a few hours after the session, and then I was much worse off for a few days afterwards. My acu doc was a D.O., too. So, it's not like he didn't understand medicine. He was at the top of the field. I hated it. I went for a couple of years. Never again. Why put myself through that? It was awful. Why didn't I stop after a few sessions? Well, because my doctor wanted me to go. I don't see that doctor anymore. I have a nice one now.

On the other hand, I know that acupuncture can really help some people. Maybe if you give it a few tries it will help???

Hugs
Flower

Thanks Dani! Love you all - you are such a big help and support!