Surely this condition has made you very angry, I believe it is best to let anger out rather than letting it 'fester'. How do you deal with this?
Cutting myself, although I have gone off of that now for the first time in years. Ever since I found this site I have just stopped. I still hit myself sometimes and do the non harmful things like squeezing ice cubes to let the anger go,
One thing that I have found it helpful is writing poetry to get rid of the bad feelings. I visualise all the anger in the words and watch as it turns from anger into something I am proud of.
Glad to hear that you have rechanneled that kind of destructive behavior, no need to make the pain any worse or the risk any higher!
I like to slam cupboards, I no longer slam the pots and pans around as husband bought me a new slide-in stainless steel smoothtop stove (cooker for the Brits), but I have been known to send some lids flying down the basement steps! He never gives them back to me either! I have also gone outside and screamed my guts out, scared livestock for miles, but felt a little better! LOL! Come on, lets hear your story!
You too RENIE!!!!!!!!!!!! LOL!!!!
I think it comes out as grief at times. For instance, I'm delivering meals to the elderly, part-time. I did the same job about 15 years ago, when my son was young, so I could spend the afternoons with him after school. Back then it was SO EASY. Now it nearly kills me to pick up the loaded bags and coolers and go up and down stairs. And it makes me MAD that I can't do what I used to do. Plus I've been getting dizzy lately too, which is worrisome if it happens when I'm driving.
I feel mad but also so SAD. I feel like I'm prematurely elderly. My 82 year old mother is in danged good shape over all and I move around like I'm HER mother sometimes.
A week ago I was so dizzy that I couldn't go out. Instead I stayed in and found myself yelling at the dogs and at inanimate objects. Now, I NEVER yell at the dogs, so I had to apologize later. But it just came out at the time. Not good but there you have it. I was MAD.
Hi SK! So nice to talk to you here!!!
Mike, GOOD FOR YOU for redirecting the anger into something productive! You really have something to be proud of - rechanneling your negative feelings as well as creating something productive and positive.
I also write due to this illness. Spent more than a year laid up from it and wrote a mystery during that time. Figured I might as well do something that felt positive during those low points.
Keep on writing and I'm glad this board has helped you to steer clear of the cutting and towards something good and creative in your life.
I love this, I really do! I SHOULD be doing this stuff, being Italian American, but haven't...yet.
But it sounds like a really fun way to let out all of that pent up emotion. Yes, I said fun, and I mean it!
I’m very proud of you for redirecting your anger from cutting to other creative things like pill art and poetry. Great job!!!
My way of dealing with anger is talking it out, writing or spending time with my dog. He loves going for walks or giving cuddles and this seems to get me through my darkest times.
Do you have an on-going note about all of this for the new Doc, tape it to the refrigerator door, keep it on the kitchen table or night stand, somewhere handy and keep track of these things! It is how they diagnose you, but don't tell then what YOU think it is, most of them want to hear no parts of that, just tell them about the PsA and the symptoms. Let them tell you what it is. Where your back hurts, ask then what it is, remember you are dealing with egos!! They also have to be brilliant to keep up with all of this!
My current rheumie told me I am intimidating because I ask too many questions and have read up on the material prior to a visit. Not sure what to say to this guy - he has repeatedly threatened to drop me most recently because I sought a second opinion. Based on what I have read on the PsA site I think I may have that condition along with sjogrens.
So this guy makes me very very angry. He pushes my buttons. He is also the only one responsible for writing the reports for medical disability and he is very good at writing. So I feel stuck.
Anyone have any ideas for coping mechanisms?
Sunflower, my answer: yeah, play the game and get him to write the note for disability and then find someone else.
My son had a doctor who pulled that when I said I was going to get a second opinion after my son kept getting the same symptoms and never got better from the doctor's treatment. He refused to see my sick son anymore - even tho my son was still ill! I knew then and there that I never wanted him to treat my son again. The patient's well-being should come first, before the doctor's ego. And I'm sorry but some doctors are just WRONG.
Furthermore, it irritates me when a doc gets bent out of shape if you come well versed on something. It is YOUR HEALTH and you have every right to inform yourself, whereas it's only his EGO and he still goes home, being paid no less, despite being wrong or right.
Sunflower, I'm certainly no medical person but some of your stuff does sound similar to PsA. i think it's worth keeping an open mind about PsA, and Sjogren's too. YOU know when something isn't right in your body. Doctors can make an educated guess but they are not God, despite what some may think.
All of that being said, SK, you are right. And I tried to do it your way with the rheumy but as soon as I mentioned my mother having psoriasis, he seemed to get prickly. And you know what? I really don't want a doc. who is that insecure. I won't tell him what I think I have but I want him to give me thorough info on what's going on with me, not get snippety when I give him info.
My Rheumatologist asked me so many indepth questions on a questionnaire he mailed to me before he would accept me, that I did not have to tell him anything by the time I got there, and he had the floor to ask me what he needed to. Some Doctors leave the door open to bad relations between themselves and the patient by not laying the proper groundwork
You make a very good point, SK. But my favorite docs are the ones who ASK all of the questions, and then never refer back to them. I'm truly glad, though, that you have a great rheumy because you need it, with so much going on with you. BTW, what was your first autoimmune disease dx?
Now, onto the anger issue: I have to admit that I felt ANGRY when I saw my test results and they all appeared normal, even the x rays. I'm not saying I want to have something wrong; what I'm saying is that my body is telling me everyday that something IS wrong and yet nothing shows up on the tests. So I end up feeling like a mental case hysteric. For instance, I was at my GP today and asked to look at the hand x-ray since my thumb has been bothering me again. NOTHING on the darned x-ray. But I have a hard time bending the upper joint and the base of the thumb HURTS. As does the joint. And each time I knock it against something - horrible! And yet, the x-ray was perfectly normal. Yes, I'm happy there is no damage but WHY does it feel like I have terrible arthritis in it IF I DON'T???? And why did it swell all up 2 years ago so that I couldn't use it? It's feeling like that again, and yes, I did the same motion with it recently that I did 2 years ago (then, using wire cutters, now, using hedge trimmers.) Why should such a simple motion cause me such grief?
Fibro really plays tricks on you and messes with your mind. I'm not happy about that at all.
I feel your pain. I will never forget the first rheumatologist I saw after being in the hospital. She was a very loud, arrogant, rude woman who ran a variety of blood tests. When she gave the results she said she could not help me as they were all normal. I kept asking how is that possible? Do you think I’m making this up? It was a heated discussion. I needed someone to take over my disability case. She refused by saying she didn’t know me. anyway, not to go off on a tangent but I completely understand how angry you might feel and rightfully so-
I have many more failed attempts at finding a competent doctor. When you do find the right one, things will fall in place I just know. Don’t give up or give in - you deserve answers. It’s not all in your head. Sunny
Trying to figure all of this out is maddening, trying to find a full diagnosis is maddening, trying to find a team of good Doctors is very difficult. In the mean time you are dealing with debilitating pain, losing function, trying to remember things clearly, pushing through fatigue and exhaustion....
This is so very frustrating, then even when you have a fairly clear diagnosis then you start the trial and error of the meds, some take up to 3 montis to take the full effect, worry about the side effects, like fry your kidneys or liver...time does not wait for us, it just keeps flying by.
But you are right, once you find the right doctor, you are on your way, it does make all the difference, BUT there is no 'magic bullet'!!
The first Rheumatologist saw nothing wrong with me other than I sensed pain differently, and I waited 6 months to see her!!!
Sunflower, I hope you've found a good rheumatologist at this point. Your first doctor was a real pill. I can't understand how a doctor could treat a patient like that, knowing that they're ill and in pain. Some people shouldn't be doctors who treat people. Maybe they could be researchers, but not doctors.
Yes, I understand your frustration and bewilderment upon finding out that your tests were normal. It makes no sense to feel so miserable and have nothing there on paper to show your illness.
Gee, SK, your first rheumy visit was a real dud, wasn't it? You sensed pain differently - how nice to pay someone to tell you what you already know. These people are specialists. They MUST see people with autoimmune diseases so why does it seem so foreign to them?
Ah well, sorry for the complaints. Nothing to be done. Chin up and try again next week.
Really my anger has been different. Once I found out what was wrong with me and I was not a hypocondract (sp?). My mother for years and years if you so much as cough around her, she was deathly ill by that afternoon. (my husband would call me by my mothers name when we were first married if i complained about something) But after beeing married for over 16 years he knows me that I only complain if something really hurts, and he has seen how i have went down the last few years. Ok back to my anger lol, I have accually been patient with my family and tryed not to be the yelling, angry person that i have been for the last year. We went to my in-laws today for fathers day and right now my legs, which the broken leg i know will be hurting but the other leg is on fire. I wish I could get up and walk around to ease the pain but thats not going to happen I know my good leg will not hold me up for long. My hands are on fire from having to use the cruches so I'm going to get my meds and try to go to sleep. I have a long day Monday.
Sounds like it was too much too soon. I know, it's hard not to go, but chances are good you will really pay for this. I hope that you are feeling a bit better, that the meds kicked in for you, I'd call the Doctor if you keep having this burning, especially in the leg that was not injured.
Hugs to you,
I don't know if burning is the right word, my legs are in pain and my hips, knees and feet hurt bad. If you touch me or my dog laid down on my legs he hurts me. And I have to move him, because its to much pressure on me. I know I did to much today but I really need to get back to work, so I'm trying to walk farther on the cruches and get some stanama up to go back to work Thursday night. I've already lost all my sick time and Vac. time due to breaking my ankle. Theres no way i can take off any more time. I just have to get threw 3 days this week (36 hrs) then i can rest. Planning on resting some tomorrow for a few hrs and I also have to take the girls to the summer reading program at the Libary this week. But no plans for the afternoon, so naps for me lol
I think you should keep something in mind about Fibromyalgia. They discovered some years ago the pain problem is not found in the bones or even various tissues as it is with artthritis.The pain stems mainly from the brain and the functions within in it. There is something in the cerebral spinal fluid that amplifies pain. It is a neurosensory disorder. I cannot go into all the details as I read about this 15 years ago.
I had been diagnosed with tendonitis in my thumbs back in 1996 and I know exactly what pain you are talking about. They put me on naprosyn and it did very little but upset my stomach. I changed jobs, began taking elavil and eventually it got better.
Then in 2006 when I was off elavil because I was pregnant. I developed severe pain in my back, shoulders and neck. I had it for 9 months and was going for massages. That did nothing. Then my doctor put me on flexeril to relax the muscles and that did nothing. They ordered an MRI. That was fine.
About the 8 month I went to see a fibromyalgia specialist. He had me fill out a questionnaire with all of my symptoms from the very beginning (1985). He pointed out that I DID NOT have tendonitis because it is not bilateral ( both sides of the body) It was my fibromyalgia. He gave me a prescription for Zoloft ( affects the serotonin in the brain) and believe it or not my back, arm and shoulder pain disappeared in 3 weeks. Never to have it return. For other members I encourage you to read about the source of pain in fibromyalgia. It's name changed from fibroitis to fibromyalgia because they realized the source of pain is different than arthritis.