Learn from patients with pain similar to yours

CatchMyPain Community and Pain Diary App to manage chronic illness

New to this and kind of just need to talk

Mar 23, 2015 2:35 AM

Download this app a week ago after a doctors appointment. I have been in pain since 11/22/14, the pain stared on my right side under my ribcage and has steadily been getting worse. I have had many tests done and seen two specialist. My primary doctor had thought that my pain was caused by a in large liver and sent me to a GI specialist who checked me out and cleared me of that. My primary doctor then found what felt like tare under my skin above the ribs and sent me for physical therapy for a month. The pain got worse after that so he sent me to a surgeon. This surgeon had removed my gallbladder back on 11/19/13. He said that it could be surgical insicion hernia and had a CT scan done. That came back as no information being wrong. I was then sent back to the GI specialist to see if maybe it was an ulcer, had an edg done and that cam back as not the cause of pain. This whole time from the start of pain I had been out of work. With no cause for what is causing the pain I am being sent back to work now. Just as the pain is changed and getting worse. I had asked my doctor If the pain I had could be from fibromyalgia, chronic pain syndrome, or scar tissue from when I had my gallbladder removed. He said no to it all sad it doesn't fall in any of them. I had asked if I should keep a pain diary and he said no its not worth it. I asked if I should see a pain specialist and he said it might not help. He doesn't seem to want to help. I am on no pain medication right now because of liver and stomach problems. I am at my wits ends and fearing going back to work because the pain is spreading and it's more of a tingling burning feeling on my feet, arms an legs along with the pain on my right side which can be unbearable at times.

Should I find a new doctor or see a neurologist? And advice on what to do would be great.

Mar 23, 2015 3:55 AM

Hi welcome and I'm sorry your in pain I've been there and can feel your pain I would by all means go to a different doctor cause something is causing this pain and sometimes the doctors don't hear what we tell them and then feel were there just to try to get pain pills only . So keep trying till you get help you need have you been seen by the e.r at the hospital yet sometime you get better help there or at least they will give you a shot for pain to help with relief I'm here most of the time and will be praying for you. Too

Mar 23, 2015 7:47 AM

Hi Blabbitz, and welcome! Because the pain is spreading I'd advise going to another doctor. Many of our PCPs aren't as helpful as wed like, mine included. The burning could be a neuropathy type pain which requires a neurologist and/or orthopedist. My pain doctor is a neurologist also, because he deadens nerves with epidural steroid injections along the spine. But he sent me back to a neurosurgeon when I needed it. Most neurologists require a referral.

Although its hard, try not to get so discouraged that you give up trying. You are your best advocate because you know your body better than anyone. Be assertive and keep a journal. Do what you feel you need to do in order to get answers. If a doctor thinks you are seeking drugs, tell them "no, I want to find the cause and treat it, not just take a bandaid of pills to mask the problem.". I'll be praying for you. 🙏🌼

Mar 25, 2015 2:06 PM

Thank you both for the kind welcome. I think I finally found a neurologist that takes my health insurance. I am sorry I haven't replied sooner the past day or so have been very hard for me pain wise and I wasn't really able to get out of bed for much of anything. Today is a better day however and the pain isn't too bad. Been taking thing's slow for the most part.

As for work... I start back next week Tuesday. My hr rep wants to keep to small four shifts and is giving me one weekend day off. I also have a doctors note to sit a few times an hour for pain as needed. I hope this enough to try and keep thing's going alright. Time will only tell I guess.

Thanks again for the kind welcome and the advice.

Mar 25, 2015 2:27 PM

I'm glad you have some adjustments in your work. I don't always respond daily, nor do others. I really think the weather is playing havoc with everyone. I'm having to take it easy today. Good luck & God bless.

Mar 26, 2015 11:40 AM

Another doctor! Telling you keeping a pain journal is not worth it is like saying it's not worth the effort to really figure out what's going on! Ps if you go to the ER frequently for pain meds they will flag you as drug seeking an then no doc will take the pain seriously. Just a fact, not saying anyone is doin that or that it's right.. Just true. I work in health care.

Mar 26, 2015 1:33 PM

Welcome Blabbitz to our community. You need to find to find a new Dr. see if you can get your Dr to refer to a Pain Specialist, that's how I found out my diagnosis after 3 years of misery. If he won't refer you I would find a new Dr. It's very important to keep a pain diary.

Mar 29, 2015 12:49 AM

Definitely keep a Pain Journal! Even if your current Dr isn't interested in it, a future one might be - not to mention the fact that it can help to keep you sane. As time goes by symptoms can change and begin to build a picture of sympathetic problems that your pain journal can point out for you.

Also, when a Dr finds that you don't fit the normal criteria for any given disease or condition, a lot of times they'll just push you through the system (unfortunately), and make you someone else's problem. Sorry honey, I didn't mean for that to sound so harsh. But I've had 4 Dr's do that to my husband (thinking that all he wanted was drugs?), and in the end I DIAGNOSED him! In fact, I saved his life - and believe me when I say that is no overstatement!

I KNOW how hard it is to keep going and bucking the system but honey, this is YOUR LIFE AND NO ONE CARDS ABOUT IT MORE THAN YOU DO - RIGHT?

So get online, print pages to take with you, tell new doctors that Dr so-and-so said this and that (because the last thing any Dr wants is to see his/her name in documented print), AND - THIS IS IMPORTANT - always be NICE to your doctors. Just like the other person who commented from the perspective of a health care professional, you can get a reputation pretty quickly and they WILL write it down in your chart. Once they do that, it's gonna be pretty hard to get good help.

One last thing honey and then I'll let you go. A few years ago, my husband started getting really, REALLY sick. Within a few weeks he couldn't even get out of bed because the pain in his legs was utterly debilitating. We doctored until we couldn't stand it anymore and so I finally got on the Internet and searched until I damn near went blind myself! It turned out that my husband had /has Lupus.

The doctors didn't believe me because my husband didn't fit their profile in any way, shape or form. For one thing, it used to be that it was typically a woman's disease and it usually presented with a "red, blotchy butterfly" rash pattern across the face - which my husband did not have.

Well irony of ironies - this is now about 10 years later and they are now discovering that men are developing Lupus more than women are now. No joke.

So when I say don't give up honey, I mean it - DON'T GIVE UP!!!

Your answer is out there - now find a great doctor, a fabulous support system and go find out what's wrong with you! And don't be afraid to ask for help with your pain either! In this day and age, living in pain is unacceptable!

Mar 30, 2015 2:32 AM

Again thank you all! I had called the neurologist and he doesn't take my health insurance. Found another guy who was a pain specialist and called my insurance first to see if he was in network. I found out that most if not all pain specialist in my area all mostly drug rehabilitation centers and as so my insurance only covers twenty visits and most are not bored certified. My insurance rep had gave me another option. He told to get a second opinion and gave names and numbers of primary doctors that are in my network and near me. He said to just make an appointment with one or two, bring all my paperwork from the it other doctors with me and tell my story. He also said if I like one of them and would like to change to have them as my primary doctor all I need to do is call back and let them know and they would take care of it. Sadly I have to wait till tomorrow. Got the names and numbers just past when doctors offices normally close. So I'll keep you all posted. With any luck I might be able to get in and see one of them this week. Once again thank you all!

Mar 30, 2015 6:18 PM

So today has been a horrible day for me. Called that doctors office today only to find out that he is no longer in that office and is now far away in a different city. Called around to the other places I had and they are ether not taking new people or want me to switch to the doctor before even meeting them. I brought up that when I called my health care provider and got there address and number from them that I can go and make an appointment and met the doctor before switching and they said that's not so my heath insurance won't pay for it and they are lying to. I also brought that I am looking to get a second opinion on my pain problem. I had one person hang up on me and another one tell me right out that I won't find any doctor in my area who will give a second opinion what so ever because most if not all the doctors in my area are colleagues and not a one of them will speak ill of the other or even see me unless I switch full to what ever doctor I plan on seeing. Was also told that doctors do not have to offer or even give an second opinion it's up to the doctors not the heath care providers. Other then that at the moment all I can do is go out of town to get what I am looking for. If I had transportation and or money to pay for a cab or a bus this wouldn't be a problem but sadly money has been tight what with being out of work so long and getting only a third of what I made from disability. I am trying so hard to stay optimistic and positive but today has mentally been draining on me and I am lost in what to do next.

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