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Jan 30, 2015 4:47 AM

Man, have I missed you all. So much has been going on. I am so sorry that I have been away and not checking in. Things have been really crazy but I should have made time for you guys too. But there were just so many times that I truly couldn't move my arm at all. Even that is a poor excuse, because I do use voice dictation a lot. But I end up having to use my arm quite a few times because to edit its mistakes. I am using my iPad and I don't know where to go to learn the voice commands to dictate corrections. This will.really help me when Aar. Is flaring up. On the pain scale, I think I have mentioned, it is an 8. When I had an accident 16 years ago, I fell 20 feet off a ladder and my foot came off. That was a nine so you can imagine. I don't know about you all, but I have never been able to give my pain a ten. I know this is silly. But, in my mind, if you imagine that there can be more pains then what you are feeling, than you can't put a ten. I am just saying that for myself. It is just my little weird thought I have. I have a lot of them.

So about where I have been. Wow, what a privilege to be a topic.! Thanks guys for thinking about me. You were correct I did come home from the ER visit. And it was an ordeal. They basically said there was nothing they can do. Then about two nights ago, I had to make another ER visit because The lumps removed from my muscles to below my skin. It wasn't just a few bumps, it was hundreds of bums under my skin and my arm. Everything seems to be on the right side. But the bumps stay very small when I am in pain at a scale of three or four. But when they get larger, my pain level gets to an eight. At that point, I have to put my arm on a very very soft pillow. Then I cannot move my arm at all. Any movement makes the lumps shooting pain up and down my arm. So the ER visits that I went to the other night, they did an ultrasound look at my muscle. They said it looked normal. I really did not understand because whenever it started to shrink (the nodules) on the muscle, they left these holes in my myusxle that.were Big enough for me to fit my largest finger through several.very painful holes in the muscle. So they said whatever it is, it is not life threatening. So they were not.going to run any other test. They said I need to see my PC. I told them she is out of town for two weeks. They said I should be alright til then. That is when I lost my cool. I reverted to the evil person I truly am. I told them I said I know you have to be somewhat smart to be in school and become a doctor. Why is it that out of the half hour that we have had our discussion, you have not had the ability to comprehend that I am in horrendous pain. I have explained to you and have said at least four times.that on a pain scale, my pain is an eight. If we are talking about the same scale, there is only two more left to ten, on a ten point scale. I feel that description should strongly suggest to you that it is not possible for me to wait two weeks to find out what it is. They just said that there was nothing they could do. They.knew I was taking narcotics, so I let them know that I would not allow them to give me any more. That I was looking for a nerve anti-inflammatory. Because Geodone wasn't working.

So a few days later, I go and see the doctor who is covering for my doctor. I had two problems.with him. One, he was dumb. He didn't pay attention. I would explain in detail what was going on with me. Then he would ask me questions. The ones he would ask had nothing to do with the facts I told him. He would try to see if he understood me correctly. Then he would use wrong parts of the facts. I am not surpRaised if he has not killed anyone yet by malpractice. So he said whenever I get a flair up, take a Benadryl. I told him that I think PEZ would work better. ๐Ÿ˜ก๐Ÿ˜Š So then he ask. Is there anything else? I ask him if he can recommend to a doctor who is qualified to instead of just listening to what I say is wrong with me, would possibly do an examination, run some blood work, run some test. Then he ask me what bloodwork and test do you want me to run? I told me if I knew. I would have done a little research and that I definitely would have known what test I would have to do.

I know this is a long story guys. I am so sorry but I am wrapping it up soon. So after that doctor visit, I went home sad and depressed and in a lot of pain. As soon as I was leaving the doctors office, I couldn't hold back my tears. I never cry. My pain and despair over this situation was just too much for me to hands at that moment. Oh, the other reason I didn't like the doctor was because he was a man. Isn't that funny. I am a man but I prefer a woman doctor over a male. I don't think any gender is smarter. It goes per person. But I think women are smart and empathetic and know how to communicate better. But as I was saying. I was so sad and I felt hopeless. I didn't feel that I can continue to live with the enormous pain without at least knowing what I am dealing with. Let me at least know that something terrible is not going to happen.

I don't know if any of you can relate out there. I know I am not special or unique in my suffering. And I don't want anyone to feel sorry for me. I am just relating a part of myself and sharing it with others. But with the pain, depression, fatique. I feel dead already. I feel like I am just there is nothing good or useful left in me. I am numb. When I left the doctors office the other day and I was crying, I was so sad. But hours later, it made me smile. I was happy I felt something. I don't feel like I feel anything when it comes to myself. This life of pain is wiping me slowly out of existence. I use to have so many friends. People use to seek me out. Now, I haven't heard from them in five years. I know I could call. But I haven't left the house. I don't do anything. What do I have to offer to a normal friendship? I know this is depressingly, but at times I think if I die, no one. No one would come to my funeral.

But on the positive side, there is one. Wa kkล‚

Jan 30, 2015 6:28 AM

But on the positive side, I do experience feelings through my sense of empathy. Because when I hear of people I am friends with or family, that they are going through a hard time or having a exciting event in their life! I really feel those things and really try to imagine the makings of that particular person and the way they were raised and their personality, and I try to thing how they are. Feeling about something with those things in mind. That is why my username is profiler. Towards the end, before I got stuck at home. I use to watch people. Not in a creepy way. I love people. Especially good people. I was in a wheelchair or a seat for nearly. So from those places, I would just look at people. I could see the things that made them happy. You could see the sadness I. Another's eyes and the occasional glance at another person knowing that they have been hurt by that person in some way. But this is my way of feeling. I think for now it is good enough until I learn to. Function again. I know this is off track. I was just letting you.know a little about me

So here comes the conclusion so far to my medical crisis. I left the doctors office and decided I am going to figure out what is going out a diagnosis myself. So I thought about my symptoms. Then I put myself in front of a mirror. I was there for many hours looking at myself for details to exam. Then I was looking at my body in the mirror and all of a sudden the pain came on and the lumps. I thought I would give it a try and take a Benadryl because to look at my stomach. It was broke out in a rash on my stomach, back, arms, and face. For quite some time, I have been having severe pain in the top bone of my arm. Right in the middle of it, it feels like I have a hairline fracture. I didn't think that I had a fracture. It just strongly felt that way. It was on the right side. The rash was predominantly on the right side also. The shoulder with the tore rotator cuff is on the right side. The nodules on the muscle and under the skin was on the arm on the right side. So I took the pill. I gave it an hour. I took a look, the rash had cleared. The nodules had shrunk and the pain was gone in that arm. Then I started to feel really bad for the way I behaved, treating that doctor like he was an idiot and not knowing what he was doing. I was humbled๐Ÿ˜ณ...................................FOR A MOMENT!!!. So I got to thinking. This thought just crossed my mind. I asked my wife to hold my iPad and use the video function. Then, I went to the middle of the bone on the top bone of my arm and I put my hand around it. Then there are certain turns I make with that arm that really hurt it a lot. Like seriously a lot. So I put it there. Within five minutes, all the symptoms appeared and because I did it on purpose, the symptoms were a little worse. At that point, I immediately knew my diagnosis. Maybe you all have guessed it by now. I have Complex Regional Pain Syndrome. I finially know what I have. I think it is so funny. That I figured it out before I found a doctor who would. My real doctor got back in town and she concurs with my assessmentXS. And she said the only place that can treat this is by sending me to the pain clinic. I think she is doing the right thing.

So this is the end of my long story. I am sorry it took so long to get back. Thank you guys. I have only been here a short time. In that time, you all have made me feel cared for, needed, and wanted. You also make me feel like I have something to offer. That is a feeling I have not had in a long time. It is a feeling that I have desired to have but because of my situation with my pain and the fears and depression that come along with them been unable to acquire. If is an awesome feeling to be needed and I want you all to know that because of being here and the feelings that I have come to have since being here, I know that I need you all too. Thank you for your kindness and support. I hope that I can be as supportive to you. As you very good person. But despite my imperfection. I try to be a good friend. I will try to be as supportive as possible to this very great support group that I can't do without. Have as great a day as possible.

Jan 30, 2015 6:40 AM

Welcome back profiler,sorry you had to go Thur all that but glad your here caused you were missed I'm here any time you need a ear

Jan 30, 2015 7:56 AM

Hey Profiler... I have been thinking of you, praying for you and worrying about you. I'm so sorry you had the same crappy experience at the ER when you went to seek out help. Also, the doctor that was covering for your PCP certainly could have been more helpful as well. I'm really happy you found an answer (even though you had to figure it out on your own). I was recently diagnosed with crps as well and it's no fun. (Not that ANY of the crap we go through is). Just know that I fully understand about friends, etc.. You have a lot to offer in a friendship. What is normal?? Who knows? Is there even such a thing? You are a kind, compassionate, empathetic person. You can offer your time even if it's on the phone. You are a part of US here in this group!! There are a lot of folks who were worried about you and missed you. I isolate, cry, get angry and feel useless most of the time. I can't work, I don't do the things I used to love (ride horses, etc), don't attend parties. I feel like I'm here as a spectator, watching everyone else living their lives and the years just passing me by. It's no wonder most folks like us suffer terrible depression with this pain. ANY time you need an ear, to chat, vent, laugh, scream... I'm right here and will be as long as you need me to be. I'm glad you're back and hope your day is not too painful and that its peaceful. Know you're important Profiler, you are to me!!

Jan 30, 2015 10:15 AM

Profiler, I really hate the experience & suffering you went through. I've been there, and its times like that that make me wonder, "am I just nuts?" But then a caring doctor proves I'm not. I hope you're on the road to some major relief! And I agree with you, women doctors are more empathetic and willing to go the extra mile. Funny thing is, 90% of my docs are male...lol. Praying for you ๐Ÿ™

Jan 30, 2015 11:05 AM

That IS funny, FlappsyLady, my docs are male as well... It's definitely true about female docs being more empathetic and willing to go further in their testing.

Jan 30, 2015 12:49 PM

Profiler, so happy you are back and that at least you got an answer or diagnosis to your problem, be it on your own. It stinks ( to put it mildly) how the behavior and actions of some doctors can affect us so much. I have been there where I end up crying in the car after a doctors appointment because of the way a doctor has treated me or what s/he has said to me. I actually have had some female dr's that are just as unfeeling as the male ones. But I guess there will always be some like that. I then yell at myself ( in my head) that I shouldn't give the dr that much power over me, but it's difficult to do when one feels vulnerable and ill.
I am glad you feel that you ARE important and valuable to your peers here on this site! You have tons to offer and I hope you can internalize this and increase your feeling of self worth. I think that when we have chronic pain and multiple illnesses going on, it makes such a HUGE impact in how we feel about ourselves because how much our life changes and we feel we can't fulfilled whatever dreams and goals we had for ourselves when we were healthier. But I believe we can still contribute to each other here and in our daily life at home and community with our empathy and wisdom we acquire through our experiences.
I hope for you and everyone here a day of less pain and 'sunny' skies....and gentle hugs.

Jan 30, 2015 1:04 PM

Wow what a story. I can only add something funny to help. One time I could not get through to a doctor so I just started quaking like a duck...finally he asked what the hell and I said Oh I am sorry since you are a quack I thought maybe you only speak duck. The look on his face priceless. I never went back or paid the bill. I am truly sorry that you had to go through all that. Thankfully you should be on the right road now. Welcome back we were all worried about you.

Jan 30, 2015 1:20 PM

To all, I never beat myself up for crying...its nature's release valve from pressure overload! ๐Ÿ˜ข... ๐Ÿ˜€

Jan 30, 2015 2:15 PM

Thank you all for your comments. It feels so good to be missed. I have missed you all a lot too. I knew how to diagnose crps but now, I have no idea what I can do about it.. The thing that I have found relieving so far is my lidocaine patches and sitting very still when I am in pain. But besides that, they only told me to go to the pain clinic. I am going to research online. I made a mistake before I knew what I had. I have this neurosis. I worry about things that are not symmetrical and I don't like things on me that are not suppose to be. So like if I get a skin tag or the beginnings of a mole, I remove them myself. This sometimes has resulted in a small infection. I would say that has happened twice out of the many times I have had them. So the other day, I was looking at my eye and I have this red dot. That is getting a little bigger. I felt compelled to remove it. It is very close to my eye. So when I did it, it made under my eye swell a little. I did not like that, but I didn't look real bad. It was fine for an hour. But it was on the right side and then an episode hit with the crps and it went huge. I looked like I was in a fight. Ha ha. It is getting under control now. It is almost back to normal. I have a lot to learn with this. Well, my friends. Have as great as day as is possible as it is for you. Best wishes

Jan 31, 2015 1:42 AM

Hi profiler.

Can I give you an e-hug?

Feb 01, 2015 8:19 AM

Hey Prof! Glad you are back and maybe now things can slowly get a little better!

Feb 01, 2015 8:38 PM

Hey Profiler... I'm sending you a gentle hug and healing wishes that you are feeling better soon!

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