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foreversore posted:
I am so beyond frustrated and upset. I was under the mistaken impression that pain management doctors were supposed to try to manage your pain. Apparently I was very, very wrong. I called my pain management doctor again on Friday and they called me back today to tell me that since the first epidural made my lumbar area worse and the cervical epidural did nothing for me that he is done with me and I have to go back to my primary care doctor. Well, I called his office and I can't get in until the 24th of this month. So in the meantime I guess I will continue to suffer the constant pain and the sleeplessness and restlessness. I really feel like I am slowly going insane from the constant suffering with no relief. I am seriously at the end of my rope. I would go to the ER for temporary relief but they are a joke. When I went on Christmas for the concussion and bruised tail bone the doctor asked me what medication I wanted. I told her I don't know I am not a doctor but I can tell you what hasn't been working. So what did she do? She gave me the same medication I told her didn't work. I tried it for one day, even doubled the dose and it was like taking a sugar pill so I said screw it and stopped taking them. I REFUSE TO LIVE LIKE THIS FOR EVER! I am hoping my regular doctor will help. I insisted on seeing him this time in stead of a nurse practitioner but the having to wait is not making me very happy.

I don't know if the pain I am dealing with is from the DDD/arthritis or if it is from my FM. The current FM med and antidepressant I am on aren't working either. I feel exactly the same whether I take them or I don't. I honestly don't care what my doctor does to get me some relief I will try anything to knock the pain down to a manageable level.
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crystalgreeneyes responded:
Hi. I know how you feel. I have gone to the ER a couple of times when my pain was unbearable. They always give me Percocet which is Oxycodone. I have said this does not help me and makes me very sick but they just seem to ignore that. I don't ever go to the ER any more. I can't stand waiting there for so long just to end up getting a script that I don't want. I asked my dr. to refer me to a different rheumatologist because I thought the one I went to was useless. I felt like I had to drag every bit of information out of her. When I asked about trigger point injections she just said they don't last very long and she doesn't do multiple sites. I don't even know if all my pain is from fibro. DDD or myofascial. It's all lumped together. If I have anything else I wouldn't be aware. When I go to the dr. every complaint seems to be linked to fibro. without any investigation. I am in pain all the time too and haven't found anything to relieve it. My days are full of fear for the future and my anxiety level is bad. I don't trust myself to do things that used to be second nature. This is truly a cruel illness. We have to keep on asking and getting mad as Nancy said. I got pretty mad at my dr's office the other day. He does nothing for me except write for sleeping medication and then I just want to take it all the time so I can sleep and not feel the pain. Sorry you are going through this too. Take care.
 
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booch007 responded:
Hey,

I am so sorry this doctor seems to have issues. Pain Management offers many different avenues of care, not just spinal blocks and epidurals.

Ours is run by Anesthesia and are quite good. I would think maybe you could try another office, a large teaching hospital facility?

I saw about 9 doctors until I found my fit. I can't tell youthe tears in the parking lot or frustration to the words said to me. I just knew I could be better, do better...I just needed to meet the right doctor.

Rheumatology as a rule is the avenue for this condition, but I use Neurology (with a specialty in myofascial work)

Pain management would be my last place as their methods are always med related and I try so hard to do alot around the meds to help.

Please seek out another physician to help you. Keep the primary appointment as this doctor should know you the best and be your Champion to reach out to the specialist.

I have always written an opening note to my docs and talked about all I do to be better, then stating what doesn't work or makes me worse. I ask for their help and try to make it a collaborative effort to get me better.

I never ask for pain free as that is not attainable, just keep me functional.......I think though if my Soma and Tramadol and savella were taken from me...I would probably use the words you are using.

Youneed help to deal with this and a game plan needs to be made. Please get another doctor so this gets better for you............so many hugs, Nancy B
 
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lb707 replied to booch007's response:
Nancy's answer was very will written. I have learned you need to become a partner with your Doc and that is not always easy. The Dr. I have now is not the one I went to when I was first DX as you need kiss a lot of frogs to find a prince.

I have found I make an appointment with my PCP for a certain issue such as recently it was some pain in the mid back. Instead of treating fibro it was just that area we focused on. Don't like the dx of DDD but knew it was coming for a long time.

When we go in and say I hurt all over they do not know where to begin. It may take more visits to get all things addressed but once we get there we have a Dr. who can treat us better.

When I approach it that way they don't let me blame it all on fibro and they treat each symptom and they don't blame it all fibro either. I have fibromyalgia I am not fibromyalgia is my motto.

My Dr. and I are both ones who use meds along with supplements, eating right and exercise. So I am open to all her suggestions and by doing this we have become partners. That does not mean at times I do not leave like she no way knows what I go through.....we are human.

laurab
 
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foreversore replied to booch007's response:
Hi, Nancy that was my whole issue with pain management. i don't mind jumping through hoops and getting the epidural shots but when he made me worse the least he could have done is medicate me. Every single doctor in the area I live in tries to never give pain medication at all if they can get away with it. No matter how many times I called and complained it was all on deaf ears. My primary care is my last hope. It was his nurse practitioner that sent me to a rheumy and the rheumy sent me to pain management. The rheumy and pain mgt want me to see neuro but my PC has to do the referral. I am just so tired of being on this merry go round. I already hurt and am sick and the merry go round doesn't help. I know I will never be pain free and I am OK with that so long as they can tone it down enough for me to be able to do even the simplest things without initiating a huge flare and I want to be able to sleep. I miss sleep. I take 100 mg of Savella BID and I don't think it is helping if it is helping the FM then I need help with the DDD thats the problem I can't tell if my pain is fron the DDD or the FM
 
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foreversore replied to lb707's response:
thats the other part of my problem. Every complaint I make the nurse practitioner and the rheumy and pain mgt all blame the fibro. The pain mgt doc here wont deal with my FM he says that's the rheumy's issue and the rheumy wont deal with my DDD he says that's pain mgt's baby. So I am hoping that actually seeing my doc instead of his idiot nurse practitioner will get me somewhere.
 
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crystalgreeneyes replied to foreversore's response:
I have been reading your posts and I feel so bad for you. I am sure many of us here (probably all) have felt the frustration that you are experiencing. I have been my worst here and have had many days when I wanted to give up. The responses and helpful advice and just the support of others have helped me through. On my last dr.'s visit, I asked for a referral to a different rheumy and also a neurologist. I have to ask for everything, nothing is suggested. My dr. told me that I could only get one referral per visit? Who knew? There's always a long wait for specialist appts. where I live but I am sure that is common.
Have you tried changing your diet? I know for me that when I have sugar and gluten products for example, my pain really increases. It is difficult to avoid these components but there is difference. People with fibro often have a host of sensitivities to additives and so on. A craving for sugar is very common too because we want the sugar high in order to feel better and that is very, very hard to deal with when everyone else is enjoying it.
I hope you can work something out. I don't even know for sure what my pain is from right now but it is intense. Everything I experience is put down to fibro so that can be an issue with drs. for sure.
I only take a sleeping pill because I have nothing for the pain and I get crazy when I can't sleep. I also take an anti-anxiety med. but I haven't had it for a few days and my pain has really increased. Your anxiety will cause your pain and distress to be compounded. The past few days I have been taking Hylands Calms for nervousness and insomnia. I think this has really helped me to cope. I take 2 every few hours. It is strange really because drugs that would make other people pass out for hours, have so little effect on me so I am surprised by this. Anyway, I guess you have to insure that these type of natural remedies do not interact with your Rx medications.
Take care and I hope you feel better.
 
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booch007 replied to foreversore's response:
Good morning,

I see alot of savella in there. No wonder you can't sleep. I have spoken of this med before. A catch 22 it is.....also it can't stand alone in the issues here....

I feel for you during this passage of trial. IT will get better and in years to come you will remember this as a tough time. Thank God memory is selective. I can't really remember how painful my tears in the parking lot were.....I just knew I had to find the right doctor........I am hopeful for neurology then for you too..they have helped me so much.

When you gofor appointment ask for the doc in the practisce that deals with myofascial/FM patients...or ****call ahead and find one and see that he is in your plan and get the name to your doc. You do the leg work. Maybe that is better then depending on anyone.

We research everyone these days.....you can find where they went to school, any action suits against them...specialty and sales pitch are there on the computer. Find through your insurance participatings and then google them and read up.

GET EMPOWERED.....I bet while you are concentrating on the hunt and find of this "Physician Champion" you will have less pain just knowing it will be better soon.....

Many many hugs, it is rough time for sure. Nancy B
 
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foreversore replied to booch007's response:
Thank you Nancy and Crystal and everyone else. I seem to be having a better day today, the first day in months where the pain has been even close to manageable. I am being very cautious as I want to hold on to this as long as possible. I do want to discuss getting off of the Savella and Wellbutrin. I don't think that either works at all and would like to try Cymbalta instead and something for anxiety too. I just need to hold on til the 24th. I am running out of all of my meds but I don't want to go to the expense for the refills if we are going to be making changes.

I am going to keep hangin on. This trial and error process is killing me. I like Crystal seem to be resistant to a lot of medications. I either need a higher dose than most or they just flat out do nothing at all for me and that scares me to death. I wonder if I will ever find something that helps but I know I have to hold out hope so hope I will.


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