So I follow a blog called A View From The Third Floor run by Elliptical Man and he is conducting challenges for each month. January is to do something new. Now as I pondered this exciting adventure thinking what could I do, visit a new place near where I live or a new recipe, my dear friend called me and he decided to venture off to Borneo! I told him never to ask me what is new with me ever again...hahahaaaa. He actually sent me a mini film of his trip into the jungle on a small boat and some beautiful pictures of tropical flowers. I can't wait to hear if he saw any orangutans ( not that ugly orange one living in the white house who is slinging his own doo-doo everywhere-imagine the clean up!)
What did I do that is new? I changed doctors and saw a new doctor and met with him this past Wednesday! Now you might think, "Whoah, this is so exciting it is making my heart pitter patter...NOT", but it is exciting to me and I am cautiously optimistic. and hopeful. I have been dealing with pain for 30 years with no doctor truly believing in my pain and condition. Over the years the pain has become worse and it is in every single joint, even my jaw. There is not one day that I don't have this and I know many of you truly know what that feels like. One Doctor did inform me that I have Ehlers-Danlos and from many visits to doctors who told me I'm just depressed to others who just say I shouldn't be in this much pain, let's just say...after 30 years one gets a little discouraged. My last Doctor, who I have been with for close to 30 yrs was angry with me for having to ask for tylenol 3 every 28 days because he would only give me 40 pills and then said "You've gained weight" and made a noise like I expanded into a giant water balloon, is now history. He used to be good otherwise I would not have stayed with him, but he always had an issue with my being in pain and giving out medication plus I think he is losing his marbles.
So this new doctor told me most doctors don't like dealing with patients who have pain because it can't be diagnosed properly. He will be sending me to a doctor in Toronto who specializes with Ehlers-Danlos and he also understood that I am not an addict! There was one day, about 3 years ago when I was in Home Depot and I had hardly 0 pain...0!!! I felt so happy and had no desire for a tylenol 3. I took in that moment because I knew it would change but this was such a happy memory...it really was and it confirmed, to me, that I am not addicted to tylenol but am dependant on it which is a difference. If you ever have had a toothache, think of that ache in every joint and that is about what I have never mind dislocating a joint here and there.
So, to make a long story..long, he has given me 100 tylenol to last for 2 weeks plus I am on a new drug, Gabapentin. It is an anti seizure drug but often given to people with chronic pain. Now it says weight gain, which I am not happy about but this is a trial. My new doctor said one will see if this works and what the Dr will say in Toronto plus he is sending me to a Dr in Hamilton/Dundas area who specifically deals with people in pain and welcomes these people with chronic pain. My new Doctor said he IS listening to me and feels I probably do have Ehlers-Danlos because he has a good friend who also has it as well as her daughter. (E-D can't be found in a blood test or DNA test)
This past month, with the weather being damp and not as cold as it should have been has done a number on me which is why you have not seen any postings of my cards...I just can't make any but I am hoping soon I will feel better....maybe this weekend. I am crossing my fingers that I am being heard and that my pain will be managed better...and I hope I don't turn into Blimp O Birgie.
Good luck with your treatment. I was on gabapentin years ago for pain from a trapped femoral nerve. And yes, there was weight gain, so what else is new, LOL.
ReplyDeleteDoctors suck. I mean, seriously, you go because you're in pain, and they don't believe you? Because you would lie about a thing like pain. *shakes head* This is why I avoid doctors. There's a mindset there that they got from being the kind of people that would want to become doctors. It can make them a little inflexible.
ReplyDeleteIf it takes away the pain but you gain a few pounds - so what, I say. It's worth it. I'm glad you found a new doctor. This one sounds kind and reasonable. And I've known a lot of people on Gabapentin. I'm hoping that's a good sign and I'm keeping my fingers crossed for you, dear friend. Love to you.
ReplyDeleteHopefully the new one knows what he is doing and can get you there. So many just think you're nuts or something, pfft to those idiots. And yeah, with Robyn, if it works, screw the few pounds.
ReplyDeleteA great idea really, to try something new, even if it appears insignificant at first. And good luck with the new doc. Warm greetings!
ReplyDeleteBirgit, I've knocked on wood for you. I hope the treatment works. Good for you for moving on to another doctor. I don't get doctors who tell their patients the pain is all in their head. Big hugs to you.
ReplyDeleteWow, what an ordeal. Good luck with all this in the future.
ReplyDeleteI had no idea you were in chronic pain. I'm so sorry for you and think you did right to get rid of rude-unhelpful-doctor to find new ones. I really hope you can find one to end your suffering. Writing and working on the laptop all day has turned me into a blimp I don't even recognize. I hope it doesn't happen to you.
ReplyDeleteDoctors don't like dealing with patients that have pain? They must be in it for the money rather than a need to help people.
ReplyDeleteOuch. I hope you feel better.
ReplyDeleteChronic pain is tough and I know too well how dispiriting certain doctors can be. And remember - weight gain would totally be worth being pain free!
ReplyDeleteSeems like you finally got a "keeper" of a doctor who is willing to look beyond "stereotypes" and treat each person individually. I know doctors are always on the lookout for "drug seeking"individuals which you certainly don't qualify to be. You just want relief so you can function and you have a legitimate medical condition that causes pain/discomfort. Glad he was willing to work with you and prescribe what he thought was appropriate for you as well as get to specialists who potentially can help you more. I hope it continues to be a success so down the road you will be more pain free and able to enjoy that which you want to enjoy and pursue as hobbies, interests, etc.
ReplyDeletebetty
I'm so sorry you're having to deal with chronic pain. As you know, I can relate from dealing with chronic migraines. I was also on gabapentin years and years ago. I hope it works for you! I'm so glad you found a great doctor that's a good fit. So did I and it's made a world of difference. People are like, but you still get a migraine a week, how's that good? Because, it's better than three or four days a week. I'll take it! :) I'll hold you in my thoughts and prayers that you see improvement!!
ReplyDeleteSounds promising, fingers crossed the new doctor can help.
ReplyDeleteOh Birgit I hear you. I haven't been in pain that much or that long, but I too am dependent on Tylenol 3. They have already proved that you cannot be addicted to it. I do hope the new doctor(s) can help you. Sorry you have to go to Hamilton and Toronto but.....
ReplyDeleteToes crossed and hoping for the very best outcome for you. I hate it when you know somethings wrong and the doctors just shrug it off. I'm so glad you've found someone to work with you.
ReplyDeleteI hope this doctor works out for you. More doctors need to learn to listen to their patients. They may know how to practice medicine, but patients know their own bodies.
ReplyDeleteThere's nothing more draining than constant pain. And if you can't get a doctor to support you--even with understanding--that pain can be so isolating. Glad you struck out to find a new medical person. Fingers crossed that he'll help you.
ReplyDeleteDo you take a chondroitin/glucosamine supplement? I take 3 a day along with other vitamin supplements. It does wonders for joint pain.
ReplyDeleteI've had doctors think I was lying about the pain I had before, which had to do with my gall bladder. I had a doctor point-blank tell me that it's NOT my gall bladder (after all the tests) and even start questioning me. I saw a surgeon, had my gall bladder removed (turns out it was in bad shape), and have not had any problem since.
ReplyDeleteI sure hope that your new doctor helps you.
Anxious to hear what your new doctor has to say.
ReplyDeleteHugs
I feel so sorry for you. Birgit. I was born with a rare form of arthritis and was in pain for about four years when I was 19-22. I finally said I wasn't going to allow it to rule my life anymore, and blocked the pain. But those years I was in pain, no one wanted to listen. I'm glad you finally have someone who may be able to help you.
ReplyDeleteI want to thank all of you for your most kindest responses. I can not tell you enough how much this means to me. I will keep you posted about what my doctor says and will be seeing him Feb. 14th. I do take vitamins to help and I applaud anyone who can just will the pain away....this is great and glad for anyone who can do this and be pain free. Thank you once again to everyone❤️
ReplyDeleteIt must have been so disheartening to be in pain and have a doctor who didn't listen to you. I am so glad you found someone new.
ReplyDeleteI'm so glad you found a doctor who is listening to you and I hope the trial medicines work. I can't imagine the frustration of living with chronic pain and then having a doctor not take you seriously on top of that. I hope you are feeling at least a little better by the time I am writing this!
ReplyDeleteI always enjoyed Huey Lewis:)
ReplyDeleteYou have a great one.
Yay! I AM actually excited about your new doctor, because I know your struggles. Or I should say my wife does. She has some chronic nausea that she's been getting since she was a teenager, and no doctor ever knows what to do with her, because they can't diagnose anything (so, much like you in the past, they just assumed she was depressed or acting out or whatever). So hurray! I hope they can finally get you some relief.
ReplyDeleteHugs, Birgit! Good to hear about your new doc who's proactively trying to manage your pain! Gabapentin is an effective drug and is used for a number of chronic issues, and works. I can imagine the pain you're tolerating because my Mom suffered too. I am always amazed at how cheerful you always are.
ReplyDeleteYou had me guffawing at that orangutan reference! Love you!
There are no manuals for navigating these waters Birgit. Take care of yourself and do yoga. It will make you feel better.
ReplyDelete