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Finding New PM Doctors

Hello All,

The nightmare of feeling hopeless and alone continues. Last week was one for the books. It was hell. Pain levels 8-10 for 7 days. Needless to say, I am exhausted, frustrated and unhappy with the way things are at the moment. Not trying to complain, just want to share my experience. 

After day 3 I had had it. I called the nurse line at the PM Center and left a message with them last Thursday morning. I was not called back until Friday night right before they closed. I told the nurse of my situation, she replied, "Have you been working on your PM exercises (Breathing, Meditation, Trigger Point release)?" I replied, "Yes". She asked, "Have you been doing cold and hot compression?" I replied, "Yes". She replied, "Have you been taking your medications as directed?" I replied, "Of course." She replied, "You know, it takes time for these practices to work on your pain". And that was all she said. I was shocked. No extra tips were given, no schedule to come in and the see doctor so he could assess my pain while it was happening.

All I could do was, cry... but what I really wanted to do at that point was scream at her, telling her this isn't my first rodeo. I've been working on these exercises for 2 years now with no results, and my PAIN IS GETTING WORSE AND WORSE AND WORSE. Sorry for being dramatic, but I have to explain to you...I'm not a very dramatic person. As I have said before in past posts, this pain is changing me. I know it'll make me stronger in the long run, but holy holy holy...How much longer will I have to suffer to become the superwoman?

The tears came as a flood. I felt let down. I thought the PM Center was supposed to help me manage my pain? I can't live my life on the couch any longer. I am missing out on so much life that there is to live. Not to mention that inability to work while experiencing those pain levels creates such a stress, that adds to the pain. I don't want to go on disability... I am too (bleeping) young for that (almost 30). 

For those of you who do not know me yet, I am a 29 year old CP victim. I have been in CP for 4 years, the pain introducing itself to me when I was 16. I have tried going to space and beyond trying to fix this issue. I have been to at least 15 doctors. I've tried to relieve the pain with: Cold and Heat, Massage Therapy, Cupping, Trigger Point Injections, Trigger Point Release, Exercise, Dieting, Pill Therapy (Gabapentin, Tramadol, Venlafaxine (Effexor), and Ibuprofen, Dry Needling, Meditation... and I think that's it.

Any suggestions for me as to what else I can try?

So, after experiencing the weekend events and not feeling like I have anyone to help me... I am thinking of dumping my doctors and finding new doctors to help me manage my pain in a better direction. Anyone who would like to share their experience with this process, I would be very happy to listen to, and take any suggestions into account as I undergo this frightening adventure. 

As always - much love and thoughts going out to all,
Otter

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Comments

  • Hi Otter
    We are in the same boat except for a huge factor my GP gives me pain medication which only takes the edge off so much of my day is at a 7 to 10 cannot do anything without the worry of a flare. I want to scream when I read posts like yours of people being treated that way, they could of at least scheduled  you for an apt.  I have dealt with that more than once and I do everything they say (well to a point if I feel I have done enough of that treatment and it is harming me I won't do it) in fact I advocate for myself and come up with ideas to treat or test for what is going on. Right now I live in fear of my GP taking away my meds I don't know what I would do at that point. I am praying that the therapy I am doing right now will help. We all know the direction they are going with pain meds you read post after post about it. You know I am a firm believer that pain meds can be a great tool but we have to do our part and try whatever we can and it sounds like you believe that too.
    You know at this point they are not supporting your needs so move on and that is one of the most frightening things to do. How do I find one that will help me not with the drugs but mostly with testing, investigating, looking outside the box, follow-up, listening on and on. It is hard for them to figure it out the body is so complicated and they are all not trained in everything but we need to find the one who will work with us to get to the bottom of it. Have you checked out the searches for doctors in your area and looked at the reviews some times they help. I read that teaching hospitals are good but here in Utah we don't have many of them and their reviews are not good but maybe check that out. Do you have to go to a pain clinic cause there are other types of doctors who treat chronic pain like a physiatrists (sp?) they deal with Chronic Pain.
    I get that part of wanting to scream at them but it would only cost us. That reminds me of this Pain clinic I went to years ago and they had signs "do not raise your voice", " do not interrupt", and the signs proved what that place was about I left there. 
    One thing keep in mind is have they said there is nothing more they can do because some times if you leave it up in the air it can look like doctor shopping. If they do have ideas have them go over them with you and make sure it is all documented in your  medical files. 
    Wish I could be more help dang it please let me know how you are doing and good luck finding a doctor. 
    Sherri
  • Sherri - I'm also in Utah. Just FYI... what doctors have you tried and liked/disliked so I can avoid the bad ones?

    My pain clinic has PT, Psychologists, and Psychiatrists. My Psychiatrist is completely useless. He's literally said 30 words to me.

    Interesting we are both in Utah. Direct message me if you want to speak about a possible meet up. 
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