My trip to the pain clinic doctor

General
1

Hey.. I went to my pain clinic yesterday.. and I got a doctor who does not believe in pain pills and actually TOLD me none of the doctors want to treat fibromyalgia patients.. SERIOUSLY.. she is putting me on TOPAMAX?? no more flexeril, no hydrocodone for the bad days.. I am so under the bus....

She says she wants me to do water aerobics and 30 minutes a day on a treadmill.. !!

I told her that I was in bed for 5 days for helping a guy lift the boxes and ship at work for a few days...

I asked if I could see a different doctor and she said her and her partner agreed not to see each others patients.. so .. WHAT NOW

2

Well, I do know that my pain management doc told me no more hydrocodone pills now that my procedure is over and the worst of the pain is gone. I was sad but he said it's addictive so I couldn't have any more. It's a bummer. I can understand your concerns.

Why no more flexeril? It's only a muscle relaxant. My pain doc gave me a prescription for some, saying it helps to loosen up the muscles, which may be causing some of the pain.

Can you see docs at another pain clinic? if not, I'd contact the other doctor's administrative help and tell them your concerns and how you're uncomfortable with this treatment.

I wonder if the pain management doctor's refusal to give out hydrocodone (in both of our cases)has to do with the government's making pain meds much more difficult to obtain?

3

I go see my GP tomorrow to tell him how my pain clinic went, he says the government has him terrified to offer pain medication. So I am sitting here with my mid back at a level 7 spasm. He was relying on her to cover pain prescriptions. (so much for THAT one)

I told the doctor I was lucky to have a sedentary job, she twisted my words saying that I LIKED having a sedentary job. (funny how well she knows me in 3 minutes , I have been a bakery manager, a line feeder at a window factory, a heavy equipment operator (the big stuff that beats the crap out of the driver) and again factory work , ((Oh and my ex-husband and I built our own home evenings and weekends))

I told her I had a 3 year old that I had to run after, she said that is activity not exercise. I told her I cannot even keep house ( I try and it hurts and or EXHAUSTS me)


I cannot take off work to go to aqua therapy (while I am quite sure a big warm bathtub and no stress sounds fantastic) , I can hardly walk through a grocery store to get food for my children. I did not used to be this way!!

She basically quoted web MD verbatim and was on such a roll telling me all of the information I have already researched that she was visibly ticked off when I would interject my opinion or experiences.

4

Oh.. and it did not help that yesterday I was a major fibro fog idiot, I could not even remember my meds or all of my medical history ((so remember to write this stuff down on your good days people!!!))

5

I am at a loss for words right now OMG!! Drs and their stinkin' exercise!! Like doing normal activity is not exercise. This makes me soooo mad......

6

I am so never complaining about my dr again, he might suck but at least I get my meds

7

I sat in my doctors office this morning and bawled my eyes out.. I do not cry dammit I am stronger than this.. I think I was having my own personal funeral for the person I was before fibro... does that make sense.? Topamax, sulendac, anti depressant, vit d , multivitamin , you are all they say I need. Dear Brain, you are suppose to stop making the pain according to them.....

8

I’m sorry you had a doctor like that. I can tell you about my own experience with pain managment. First just like your GP sometimes it take several try’s with a pain managment doctor before you find the right one for you. I have another rare disease that screams pain much louder than my fibro does. One option for treatment is some light brain surgery, with that said you have to fit the profile for surgery. Anyhoot the first pain doctor I saw within the first five minutes called my neurologist an idiot along with my GP. Then he let me know his plan was to go against my neuro’s orders and try some injections. When I was this first doctor questions such as what qualified him for such procedures and why he was going against my other doctors given advise this pain doctor got mad. He refused to answer my questions. I let my GP know that the pain doctor stunk and I had no faith nor trust in that one. The next pain doctor I saw was great on listening and thoughtful. He agree that I was unlucky and surgery would not be the answer for my pain, he added no injections either, as it’ll do more damage than good. This pain doctor took me off all of my medications including opioids. Well it was no biggie till my GP and I went through the second pain doctors list of medications because A I would serious side effects or B had no pain relief. Through was also the issue of being a long distance patient with the second pain doctor. It made it more than difficult with asking questions for both me and my GP. So now I’m totally messed on medication, in pain that is level 9 and 10, and my health is going down the tube fast. So my GP and I try one more pain doctor. This guy is closer to where I live. He listens to me as well. It has taken me months to estibalish a doctor patient relationship too. He will prescrib opioids to me for few reasons; 1 I have tried all available medications for my condition/s and I have document history of this, 2 I’m not able to have surgery or any injections as well ( other wise I would have gone that route), and 3 I have to take random drug test for his office. Also I have state mandated pain managment contract with my current pain doctor that I must follow. Still it has not been a walk in the park with this doctor’s office, as I was acussed of being a drug seeker by one his employees. Sometimes it takes someone to go with me to be my advocate to get him to listen to me, not so much now but when I first started seeing this pain doctor it did.

Sadly, pain management doctors and other doctors are being harassed by the DEA. This due to huge amount of abusers and pill mills. Doctors are nervous about treating pain patients or prescribing pain medications because of this. It almost seems like a witch hunt to me.

Anyways long story short some times it can take a couple try’s till you find the right pain managment doctor that will fit with your needs and care. Don’t stick with the first one if you feel like you did. Ask your GP for another referral to a different pain doc. Really I’m sorry you had such a bad experience with a doctor. That always sucks monkey booty. I hope you find someone who will be better at giving you the care and treatment you deserve.

9

Omg what is wrong with these overpaid doo doo heads. Sorry I had to keep it clean. If you know me I really do know much stronger words than that. Haha. Try another clinic / hospital? I'm not sure of the system over there but I would keep hunting them down til I found one who actually knows anything about pain. I mean how the frick did that doc get their job? Surely the job description gave them some idea of the knowledge they need to take up the job?!! Or am I losing the point?I know I have fibro fog and a little mental (ok a lot) but I'm pretty sure I know what I mean. Hunt em down!!!!

30 mins a day on a treadmill? lol. Yea thats defo gonna sort the fibro out isn't it. You would be better off with a heroin addiction really. At least you won't feel the pain. Not a professional opinion btw.

Good luck Karen! There will be a good doctor out there for you...

10

Well I just called the pharmacy because it is payday and time to pay the pill people.. if the doctor decides not to refill my sulindac that leaves me with zero pain med and a muscle relaxer, and anti depressant and an antiseizure medicine.. that which does not kill me.... i swear.. I would like to smile again.. all day.. and dance.. I really miss dancing. *sigh*

11

I was fortuante that I had Doctored with my GP and his wife also a GP for years before the car accident that kicked all of this off. For years we were under the idea that all of this pain was somehow directly related to the third car accident, that was only partially the case. He sent me everywhere to teaching hospitals who told me surgery would only ever make me worse, to pain management, I went to 5 different ones, 2 neurologists, acupuncture, still use chiropractics, I kept going telling him I felt like I still had broken bones, which I said from the start. He kept giving me pain meds, I kept not wanting to take them, so I finally did, still don't take them as maintence, but getting to be more maintence than I want. I have Psoriatic Arthritis, and a couple of other autoimmune diseases, that make you feel like you have broken bones, so even with Enblrel, I still am taking Opana, but knowing the whole diagnosis is a big part of the battle.

It is difficult to go to a new Doctor and need pain meds, they have made many Doctors so paranoid that they will not prescribe pain meds of any kind, and do not even want to give you Valium.

I do not know what your answer will be, only that you CANNOT give up. There is a Doctor out there for you, you just have to find them.

Hope you find them soon!

Love and hugs,

SK

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Wow, SK, your post was very informative. I had no idea just how your pain felt before. Sounds absolutely awful! And yet, here you are, always so cheerful. With that level of pain. You must have been so confused and frustrated with that pain and not knowing what the cause was. And then it must have been pretty hard finding out the true cause. How long did it take you to adjust to your dx, SK? And do others with PsA have pain that feels like broken bones? My goodness. That's unbelievable.

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I'm sure, the pain from the joint radiates onto the bone, making the entire bone sore, unless it is the systemic disease just going after you on a celluar level! It is wicked, and the sooner diagnosed, the sooner you can get on the medicine merry go round until you get to something that works, that is the goal and hope anyway!

I have been in some very bad places with this pain, Petunia. I am still adjusting to the diagnosis, but getting the real one was a relief, it hits you, yet just knowing is so paramount that you still feel like you can get something to make a difference, and yes, you still think there is a magic fix.

There really isn't a magic fix with surgery or with med. lamb said it when he said better, not best, and not to expect too much, that way you are not devsatated when it doesn't work, and elated when it works a little.

I have had some great days, but they are rare gifts, so you go for them when you get them, you get in the car and go or get the kids and go out with them, even put on your favorite song and dance, but with the arms and feet, not the core, so more shaking your ass moves!

I just found out on the last visit to the Rheumy, a month ago that the Psoriatic arthritis CAUSED the spinal stenosis of the tail bone. For once I did not break down in the office, but later, it hit me at home and I did. It makes you angry, breaks your heart, but again, there is a rejoicing that it does make sense, and you want to go rub this info in the nose of every stinking Doctor who dismissed your claims of pain.

Cheerful, thank you Pet, sometimes it is a sardonic cheerful though! I will never be one of those gracious people who thank god for their illness or injury, but I made up my mind a while ago, and still remind myself that THIS day may be the best day I will ever have the rest of my life, and I want to do something good, do some good. So I move myself out of the way and try to lift up others, because I do understand, because I have been there, gone through it, and still do.

Today is the last day of summer, I celebrated it yesterday, and the day before, taking my great grandson out to play for hours. I teach him what things are, he teaches me to be happy to be alive to share his life with him!

14

Sad sad sad that the PsA caused the spinal stenosis but not surprising, really, is it? Still just a darned shame. But at least you do have one more answer to the mystery.

I love your philosophy, be it sardonic cheer or not. Sardonic cheer works well for most of us, anyhow.

I still am in denial and wanting the magic fix and feel badly knowing there isn't one for you that could undo all of the damage. But...at least there's a way to stop any more damage. That's huge.

I'm still gobsmacked by the level of pain you experience. I just had no idea of the level of pain you were in. I have no idea if the people with the worst fibro pain experience it as badly as you do. I'd sure be curious to know.

And lastly, your great grandson is the best medicine of all for having good spirits. Oh yes, the beauty of sharing your life with a sweet, innocent wee one. I miss those days! I'm glad you have it to look forward to but can also send him on his way when you're tired.

Bless you for your handling of that nasty illness.

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Yes, one more answer, the PsA caused the stenosis, and that together with the car accident caused the fibro. See Renie and I think on the lines of the Rheumatologist that it is a condition caused by chronic pain, caused by something still undiagnosed, or dismissed. That is why I always ask if there is an injury or other illness, a trauma, that is why we ask everyone to fill out and stay updated on their profiles so we can find them a link that will give them an answer, the best possible hope!

Some are still in the denial or anger stages and don't want the answers, they don't want to do the work, and let me teil you, it's work to get the answers. Some are knocked down by other emotional issues and can't get up yet, everything you say to help them is wrong... so we are all in different places at different times...

I was also very fortunate to have had my GP and DC before all of this really kicked up! That was huge to have those two wonderful men on my side. It still took 7 years of this, even with their help, and I had a husband, a supportive one nearly all of the time. He is battling his own health. So sometimes it was alot for him to handle.

I am fortuante that I had already had my diagnosis, though each time something more is added, perhaps he thought it best to handle me that way or perhaps it is the getting to know me, see what a med is doing or what an x-ray will tell him. Not sure he even knew of the Stenosis as the idiot I paid to read it never even saw it, it was my Chiropractor who found it on the x-rays, then I carried them to my GP and he confirmed it right away. I still lilke the large x-rays you can stick on a light wall and see on actual scale.

Anyway, I was in a pretty good spot when I got here, had I joined years ago, then I may not have been able to have been as cheerful and uplifting. There had been huge personal growth involved, and evolution took place.

Thank you for your kind words Pet, I am also a huge fan and real friend of yours!

Keep telling the Rheumatologist about your SI joints, don't let him dismiss this!

Hugs,

SK

PS I'm not a Doctor!

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Aww bless you... God I swear I want to be a pharmacist over there, just for people with real illnesses like fibro. Everyone else can "do one!" It's so wrong that they're dishing out the old blanket punishment. Makes them no better than hitler doesn't it (He doesn't even deserve a capital "h" either). I'm sure you will get your meds. You really need to get on their a** like a haemo... It's the only way thats seems to get a result. Like our docs over here. They only listen when you get to the point of giving up altogether. Wrong isn't it.

But yes, keep smiling and laughing, even if you have to fake it sometimes. It does still help. Check out the group on here where we post jokes. It cheers me up everyday, even though the meds are not the best. Laughter will always be the best medicine.

Good luck Karen!! Don't give up the fight

17

Just found this old post as I was looking for discussions about exercise and Fibro. Fed up with my Rheumatologist telling me I need to do more exercise to help me with fatigue. I already do exercise…3 swims a week, tai chi every morning, walking and I have a fairly active job. It leaves me so down and frustrated when I’ve been to my appointments. Like SK I have PsA as well so my Fibro is considered secondary fibromyalgia. I’ve been building up my exercise as I usually do after a bad flare ( lasted from Feb to end of June ish) but do I get any credit from him for following a fitness programme…of course not! Just told to do more. Well like a fool I have, now I can hardly move and had to get into bed at 6 pm as I wasn’t sure I could manage the stairs if I left it later…ok vent over. Wishing everyone mire energy and less pain x

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Go back to PCP! that’s bull carp…I hate when people don’t believe us.

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Its hard to get validation from the medical field. They don't suffer this and have no compassion for us. They deal with so many drug seekers that I'm afraid we get lumped into that group since there really isn't much to prove our disease. I hope you will be able to find a Dr. who will help you. You may have to try a different town or another medical group with different Drs. Good luck. Hoping for the best for you